BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Beacon for rare diseases - ECPv6.17.0//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-ORIGINAL-URL:https://www.rarebeacon.org X-WR-CALDESC:Events for Beacon for rare diseases REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:Europe/Paris BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20230326T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20231029T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20240331T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20241027T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20250330T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20251026T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20260329T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20261025T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20270328T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20271031T010000 END:STANDARD END:VTIMEZONE BEGIN:VTIMEZONE TZID:UTC BEGIN:STANDARD TZOFFSETFROM:+0000 TZOFFSETTO:+0000 TZNAME:UTC DTSTART:20230101T000000 END:STANDARD END:VTIMEZONE BEGIN:VTIMEZONE TZID:Europe/London BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20220327T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20221030T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20230326T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20231029T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20240331T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20241027T010000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20260303T100000 DTEND;TZID=Europe/Paris:20260305T120000 DTSTAMP:20260109T143526Z CREATED:20260109T143520Z LAST-MODIFIED:20260109T143526Z UID:10000216-1772532000-1772712000@www.rarebeacon.org SUMMARY:Introduction to charity finances DESCRIPTION:Back by popular demand!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n We’re excited to welcome back our charity finances workshop for a second time! \nThis introductory training is designed for rare leaders without a finance background who are looking to learn the essentials of managing their rare disease charity’s finances. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Why attend this workshop?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Managing finances is a huge part of running a charity. It can be incredibly time-consuming and ensuring you adhere to the legal levels of compliance can be worrisome for leaders who may not have previous experience in this area. \nOur workshop is designed to make financial management more approachable\, equipping you with practical tools and clear guidance to manage your charity’s finances confidently and effectively. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What will the workshop cover?\n \n \n \n \n \n Spread across three sessions\, this interactive workshop will provide a comprehensive guide to the essential elements to consider when managing charity finances. \nGain practical tools and access free resources to strengthen your charity’s financial health! \n \n \n \n \n \n Session 1: 3rd March 2026\, 10:00 – 12:00 (GMT)\n \n \n \n \n \n Navigating the legal requirements \n Learn the importance of managing the legal and operational side of your charity’s finances. \nWe will cover: \n\nAn introduction to the role of finance in charities\, including the legal and governance requirements.\n\n\nUnderstanding what constitutes an effective finance function\, recognising the different roles within that function\, and ensuring clear communication by addressing jargon.\n\n\nExploration of the terminology and tools of risk management\, what you are required to do for compliance purposes and how you can make risk management work for your organisation.\n\n \n \n \n \n \n Session 2: 4th March 2026\, 10:00 – 12:00 (GMT)\n \n \n \n \n \n Practical financial planning \n This session will equip you with the essential building blocks of financial management. \nWe will cover: \n\nAn introduction to the principles of budgeting and forecasting\, including an exploration of financial management tools and consideration of how to present data effectively.\n\n\nCoverage of the legal and best practice position when it comes to reserves\, exploration of how you might calculate them and consideration of wider communication issues when it comes to reserves.\n\n \n \n \n \n \n Session 3: 5th March 2026\, 10:00 – 12:00 (GMT)\n \n \n \n \n \n Understanding financial monitoring\n Learn how your financial information is reported to the board\, understanding governance responsibilities and communicating with stakeholders. \nWe will cover: \n\nThe requirements of a trustees’ annual report\, considering performance and impact reporting.\n\n\nWhat the Statement of Recommended Practice requires of charities.\n\n\nAn explanation of the different types of accounts you might encounter\, what makes up statutory accounts – how to understand them and areas of interest to users of accounts.\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Register here!\n \n Register\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the trainer!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Caron joined the Charity Finance Group in 2010 from the Institute of Chartered Accountants in England and Wales\, where she was Head of the Charity and Voluntary Sector. In addition to supporting a number of small charities and community organisations\, Caron has been a member of the National Council for Voluntary Organisations’ National Assembly and the Charities SORP Committee. \nShe has sat on a number of government working parties\, is a non-executive director of the Lending Standards Board\, a member of the Church of England Pension Board’s Audit and Risk Committee\, and former Chair of the Board of the Directory of Social Change. \nShe was also Chair of her local hockey club. She was named in the top 30 UK social influences in Risk\, Compliance and Regtech 2017. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Deposit system\n \n \n \n \n \n Registering for this online workshop will require paying a refundable deposit of £15 upon registration. This deposit will be kept safe in Eventbrite until after the training has been completed. Following the event\, if you have attended at least two of the three sessions\, you will get your full deposit back. \nWe understand that circumstances can change\, especially in the rare disease community. Should you register for the workshop and realise you can no longer attend\, please let us know as soon as possible. \nWe will endeavour to refund your deposit in full provided reasonable notice is given. Reasonable notice for this event is no later than 5 working days before. \nFind out more about our deposit scheme here. \nIf you have any questions\, please contact projects@rarebeacon.org. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Register for workshop here!\n \n \n \n \n \n \n \n \n \n \n \n \n \n Register\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load.  URL:https://www.rarebeacon.org/event/introduction-to-charity-finances-2/ LOCATION:Online via Zoom CATEGORIES:Online,Workshop ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2026/01/Workshop-POST-Main-graphic.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20260129T100000 DTEND;TZID=Europe/Paris:20260129T133000 DTSTAMP:20260106T150400Z CREATED:20251210T102246Z LAST-MODIFIED:20260106T150400Z UID:10000215-1769680800-1769693400@www.rarebeacon.org SUMMARY:Imposter syndrome: Turning your inner critic into your biggest cheerleader DESCRIPTION:By popular demand – our imposter syndrome masterclass is back!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n If you ever find yourself grappling with self-doubt or imposter syndrome\, know that you’re not alone!\nThis masterclass offers an opportunity to connect with others in the rare disease community who share similar experiences and to learn actionable strategies that will help boost your confidence. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Rare disease patient groups play a vital role in driving change for their communities. As healthcare professionals\, industry stakeholders\, and wider society may lack awareness or understanding of specific rare conditions\, the responsibility often falls on patient groups to lead the way. This crucial work frequently places advocates in new and unfamiliar environments\, where they are under pressure to represent their entire community. \n \n \n \n \n \n While striving to achieve advocacy goals\, it’s normal to experience self-doubt and feelings of imposter syndrome. Recognising the value of your voice and building confidence is key to successfully advancing your mission and making an impact. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n To support you in this journey\, we invite you to join our online masterclass on tackling imposter syndrome.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n The masterclass will…\n \n \n \n \n \n \nProvide you with practical strategies to help manage your imposter syndrome.\nTeach you confidence building techniques to help you lead with competence and confidence.\nCover cognitive tools to help turn self-doubt into a motivational force.\nProvide a safe space to connect and share your experiences with other members of the rare disease community.\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Register for the masterclass here\n \n \n \n \n \n \n \n \n \n \n \n \n \n Register\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the trainer\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Fiona Kearns\n \n \n \n \n \n Business Psychologist – Kearns Consultancy\n \n \n \n \n \n As a Business Psychologist\, Fiona boasts a diverse range of qualifications\, including registration with the British Psychological Society for psychometrics and credentials in Neuroscience\, Psychological Safety\, Decision-making\, and Strengths\, as well as Hogan assessments. \nFiona is deeply committed to championing women leaders\, knowing it not only offers a competitive edge but also fosters a better working environment. She created the Strategic Confidence programme to pave the way for Women aiming for C-Suite leadership. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Deposit system\n \n \n \n \n \n Registering for this masterclass will require paying a refundable deposit £15 upon registration. This deposit will be kept safe in Eventbrite until after the training has been completed. Following the event\, if you have attended and signed in\, you will get your full deposit back. \nWe understand that circumstances can change\, especially in the rare disease community. Should you register for the event and realise you can no longer able to attend please let us know as soon as possible. \nWe will endeavour to refund your deposit in full provided reasonable notice is given. Reasonable notice for this event is no later than 5 working days before the event. \nFind out more about our deposit scheme here. \nIf you have any questions\, please contact projects@rarebeacon.org. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load.  URL:https://www.rarebeacon.org/event/imposter-syndrome-turning-your-inner-critic-into-your-biggest-cheerleader-2/ LOCATION:Online via Zoom CATEGORIES:Masterclass,Online ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2025/12/Masterclass-POST-Main-graphic-with-line.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20251121T130000 DTEND;TZID=Europe/Paris:20251121T153000 DTSTAMP:20251028T162802Z CREATED:20251028T162802Z LAST-MODIFIED:20251028T162802Z UID:10000214-1763730000-1763739000@www.rarebeacon.org SUMMARY:IP Strategies for Repurposing DESCRIPTION: URL:https://remedi4all.org/event/webinar-ip-for-repurposing/#new_tab LOCATION:Online via Zoom CATEGORIES:Online,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2025/10/IP-image.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20251118T100000 DTEND;TZID=Europe/Paris:20251120T120000 DTSTAMP:20251007T161253Z CREATED:20250925T082902Z LAST-MODIFIED:20251007T161253Z UID:10000212-1763460000-1763640000@www.rarebeacon.org SUMMARY:The power of the patient voice in clinical research DESCRIPTION:Nobody understands your community better than you do.\n \n \n \n \n \n Patient groups know what matters most and what meaningful research should look like. Join this workshop to gain the tools and confidence to bring that knowledge into the world of clinical trials.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n With 95% of rare diseases still lacking an approved treatment\, patient groups are a driving force for change. They bring the lived experience and insight needed to shape research that reflects the realities and priorities of their communities. Yet for many\, the world of clinical trials can feel complex and out of reach.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n About the workshop\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n This three-part\, online workshop is designed to give rare disease patient group leaders the knowledge and confidence to engage with clinical research and make their voices heard. \nAcross three two-hour interactive sessions\, we’ll explore the unique challenges of rare disease trials\, share practical solutions\, and highlight where patient groups can add value. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n We will cover\n \n \n \n \n \n Session 1 – Clinical trials in the rare disease context\n18th November\, 10:00 – 12:00 GMT\n \n \n \n \n \n Learn more:\n This session will provide an accessible overview of what clinical trials are and why they are important. It will cover key concepts such as trial phases\, protocols\, and the role of regulators\, as well as the unique challenges and opportunities that arise when conducting research in rare diseases. Attendees will gain a clear understanding of how trials work and the factors that make rare disease research distinct. \n \n \n \n \n \n Session 2 – The patient voice in trial design\n19th November\, 10:00 – 12:00 GMT\n \n \n \n \n \n Learn more:\n Designing trials for rare diseases comes with unique challenges\, from small patient populations to defining outcomes that truly matter. This session will highlight how patient groups can play a crucial role in shaping research so that it is not only scientifically robust\, but also meaningful\, inclusive\, and practical for the people it aims to serve. \nWe will hear from The Lily Foundation on the important work they are doing in this area!\n \n \n \n \n \n Session 3 – The patient voice in trial delivery and beyond\n20th November\, 10:00 – 12:00 GMT\n \n \n \n \n \n Learn more:\n This session will explore how patient groups can contribute during and after a trial. It will cover ways to support participants\, engage with researchers\, and ensure communities’ voices continue to be heard throughout the research process.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Why join?\n \n \n \n \n \n \nBuild your understanding of how clinical trials work\nLearn practical ways to influence and support research\nHear real-world examples of patient involvement in rare disease trials\nConnect with other patient group leaders facing similar challenges\n\nRegister below to secure your FREE place!\n \n Register\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Important Notice: Our ticketing provider\, Eventbrite\, now allows you to confirm tickets before completing the order form on the next page. To finalise your booking\, please ensure you fill out the form in full after paying your deposit. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the speakers\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Christa Van Kan\n \n \n \n \n \n \n \n \n \n \n \n Christa van Kan is a clinical trials expert with 25+ years’ experience across multiple diseases\, including rare and paediatric indications. A co-founder of PSR Orphan Experts and former Director of Clinical Operations\, she now consults for small pharma and biotech\, specialising in vendor selection\, oversight\, and stakeholder management ensuring the successful execution of clients’ clinical trials. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Melita Irving\n \n \n \n \n \n \n \n \n \n \n \n Dr Melita Irving is a clinical geneticist at Guy’s and St Thomas’ NHS Foundation Trust\, specialising in genetic conditions across all ages with a focus on skeletal disorders. She leads multidisciplinary paediatric clinics in skeletal dysplasia and achondroplasia\, serves as chief investigator on related clinical trials\, and authored the Haynes Manual book Human DNA – Understanding Your Genetic Code. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Katie Waller\n \n \n \n \n \n \n \n \n \n \n \n Katie Waller is Head of Patient Programmes at The Lily Foundation and a former paediatric and research nurse in early-phase trials. She now works across patient support\, research\, policy and advocacy\, serving as PPIE lead for the LifeArc Centre for Rare Mitochondrial Disorders\, and leading IMPACT\, the Lily Foundation’s patient involvement group. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Maria O’Hanlon\n \n \n \n \n \n \n \n \n \n \n \n Dr Maria O’Hanlon is Research Manager at The Lily Foundation. Before joining Lily\, Maria completed a PhD in biology focusing on the role of mitochondria in Parkinson’s disease. Inspired by a master’s project in mitochondrial disease\, she joined the Lily Foundation in January ‘24 and hasn’t looked back. As a Research Manager\, she looks after all things Lily research (portfolio\, international scientific efforts\, research comms)\, leading ‘The Research Zone’ hub. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Lee Aiyegbusi\n \n \n \n \n \n \n \n \n \n \n \n Prof Lee Aiyegbusi is Professor of Patient-Centred Research and Deputy Director at the Centre for Patient-Reported Outcomes Research (CPROR)\, University of Birmingham\, UK. He leads the patient-reported outcome (PRO) work package of the LifeArc Centre for Acceleration of Rare Disease Trials\, co-leads the PRO theme of the Birmingham NIHR BRC\, and serves as PPIE lead for projects including the NIHR Blood and Transplant Research Unit in Precision Cellular Therapeutics (BTRU-PCT). \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Pan Pantziarka\n \n \n \n \n \n \n \n \n \n \n \n Dr Pan Pantziarka is Director of Drug Repurposing at the Anticancer Fund\, working on drug repurposing in oncology – from drug candidate identification to clinical trials and health policy work. Pan is also a member of the Executive Committee of FOSTER (Fight Osteosarcoma Through European Research). He also Chairs and is the Co-founder of George Pantziarka TP53 Trust – the UK organisation for people with Li Fraumeni Syndrome. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Deposit system\nRegistering for this workshop will require paying a refundable deposit of £15 upon registration. This deposit will be kept safe in Eventbrite until after the training has been completed. Following the event\, if you have attended and signed in to 2 out of 3 of the sessions\, you will get your full deposit back. \nWe understand that circumstances can change\, especially in the rare disease community. Should you register for the event and realise you can no longer attend please let us know as soon as possible. We will endeavour to refund your deposit in full provided reasonable notice is given. Reasonable notice for this event is no later than 3 working days before. \nFind out more about our deposit scheme here. If you have any questions\, please contact projects@rarebeacon.org.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load.  URL:https://www.rarebeacon.org/event/the-power-of-the-patient-voice-in-clinical-research/ LOCATION:Online via Zoom CATEGORIES:Online,Workshop ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2025/09/Patient-voice-fb-graphic.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20250915T110000 DTEND;TZID=Europe/Paris:20250916T130000 DTSTAMP:20250717T121629Z CREATED:20250630T103838Z LAST-MODIFIED:20250717T121629Z UID:10000210-1757934000-1758027600@www.rarebeacon.org SUMMARY:Crafting content to capture your audience DESCRIPTION:Your words can inform and inspire\, connect communities and drive change.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n As a rare disease patient group\, you’re a trusted voice in a crowded digital world\, offering support\, guidance\, and insight where little else exists. \nYou’re often the first port of call\, and sometimes the only source of information available. \nThat’s no small ask. \nWhether you’re reaching patients\, families\, healthcare professionals or researchers\, the way you shape your message can make all the difference. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Across two interactive sessions\, we’ll dive into how to tailor your tone\, language and layout for different audiences and shape content that’s engaging\, clear and easy to navigate.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Why join us?\n \n \n \n \n \n Because we know you wear a lot of hats: advocate\, fundraiser\, administrator\, project manager and more! Writing online content is just one of many things on your plate. \nThis masterclass is here to make that part a little easier – and a lot more effective. \nJoin us for tools\, tips\, and real-life examples you can use to refine your organisation’s digital presence. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Working on a web page\, resource or even just a tricky paragraph? \nWhy not bring it along and explore ways to make it even clearer\, more engaging\, and better suited to the audience you want to reach. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What will we cover?\n \n \n \n \n \n This two-part online masterclass is designed to help you grow your skills in crafting clear\, confident content\, especially when communicating healthcare information. \nThis could include web pages\, digital resources\, social media and even tailoring your imagery. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n We’ll focus on understanding the different needs and priorities of your audiences\, and how to craft messages that really resonate. \nYou’ll explore new ideas in a welcoming environment and come away with practical tools\, techniques\, and ideas you can put to work straight away in your own communications. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Session One\n Monday 15th September – Understanding your audience: \n– Effectively segmenting and understanding the needs of your online audience \n– The importance of language and imagery in digital content \n– Tailoring your web content and social media to capture your audience\n \n \n \n \n \n \n \n \n \n \n \n Session Two\n Tuesday 16th September – Crafting a compelling message: \n– Exploring NHS digital content guidelines \n– Building a toolkit of strategies to assist you when writing for the web \n– The principles and power of plain English\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Register for the masterclass\n \n Register\n \n \n \n \n \n Important Notice: \nAttending this masterclass is free\, but registration requires a deposit of £15\, which is refunded after attending the training. \nOur ticketing provider\, Eventbrite\, now allows you to confirm tickets before completing the order form on the next page. To finalise your booking\, please ensure you fill out the form in full after paying your deposit. \n \n \n \n \n \n Find out more about our deposit system\n Registering for this online masterclass will require paying a refundable deposit of £15 upon registration. \nFollowing the event\, if you have attended at least one of the two sessions\, you will get your full deposit back. We understand that circumstances can change\, especially in the rare disease community. \nShould you register for the masterclass and realise you can no longer attend\, please let us know as soon as possible. We will endeavour to refund your deposit in full provided reasonable notice is given.  \nReasonable notice for this event is no later than 5 working days before. \nFind out more about our deposit scheme here. \nIf you have any questions\, please contact projects@rarebeacon.org.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the trainer\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Sue Keogh\nSue Keogh is a specialist in digital communications and a long time supporter of Beacon and our work. \nShe founded her own marketing agency and has worked extensively in the healthcare sector – Alzheimer’s Society\, East of England Cancer Alliance\, Papworth Hospital\, Care UK\, hospices\, medical device start ups and more. \nSue is a Fellow of the Chartered Institute of Marketing\, works closely with the University of Cambridge and built her career with the BBC\, ITV\, Government Digital Services\, Yahoo and AOL. \nYou can rely on Sue to give you plain\, simple\, jargon-free advice! \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Sign up for the masterclass below!\n \n Register here!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load.  URL:https://www.rarebeacon.org/event/crafting-content-to-capture-your-audience/ LOCATION:Online via Zoom CATEGORIES:Masterclass,Online ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2025/06/writing-for-web-graphic.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20250731T153000 DTEND;TZID=Europe/Paris:20250731T163000 DTSTAMP:20250717T122050Z CREATED:20250714T102211Z LAST-MODIFIED:20250717T122050Z UID:10000211-1753975800-1753979400@www.rarebeacon.org SUMMARY:Cures Within Reach new funding call: Clinical trials to validate AI-driven drug repurposing DESCRIPTION:Has an AI model identified a potential drug for your condition that’s ready to be validated in a clinical trial?\n \n \n \n \n \n Join our upcoming webinar exploring the latest Cures Within Reach funding opportunity – hosted in partnership with REMEDi4ALL and Cures Within Reach!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Artificial intelligence (AI) is increasingly seen as a powerful tool in the search for new treatments – especially through drug repurposing. By analysing large sets of data\, AI can help identify existing medicines that might work for different conditions. \nThis is particularly valuable in rare diseases\, where repurposing offers a potentially faster\, more cost-effective path to finding treatment options. \nYou can read more about drug repurposing here. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n AI has shown promise in supporting this process\, but a key question remains:\n Do AI-generated predictions actually work when tested in real-life clinical trials?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Cures Within Reach is helping to explore this question through a new funding call. \nThey’re inviting letters of intent for Phase I/IIA clinical trials that will test and validate AI-based repurposing ideas\, with a preference for rare disease. The aim is to build the evidence needed to validate and improve the AI models to help find treatments that work in real-world settings. \nYou can visit https://bit.ly/cwrrfps for more information. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n So what does this look like in practice\, and how can patient groups take part?\n \n \n \n \n \n Join us in this webinar to find out!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Up to $100\,000 in funding is available for early-stage clinical trials (Phase I or IIA) that test existing drugs or therapies for new uses\, identified through AI models \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Additional funding is available to support community engagement alongside the trial \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Eligible trials must be based on AI-generated data that supports the repurposing idea \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n The call is open to any unsolved disease\, but there’s a strong preference for rare conditions and for using off-patent treatments \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What will we cover in this webinar?\n \n \n \n \n \n \nA breakdown of what this funding call is about\nAdvice from Cures Within Reach on what makes a strong application\nHow patient groups can get involved in applications\nA practical example of a patient group contributing to an AI-led initiative\nThe opportunity to ask any questions you might have to the Cures Within Reach team\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the speakers\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Clare Thibodeaux\, PhD is Vice President of Scientific Affairs at Cures Within Reach\, where she leads the organisation’s scientific initiatives and grant review processes. \nWith nearly 20 years of experience in research and philanthropy\, Clare works closely with researchers\, patient advocates\, and industry partners to drive forward clinical trials in drug repurposing. She also serves on the Advisory Board for the CURE Drug Repurposing Collaboratory and plays a key role in developing funding calls. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n CJ Wright serves as the Director\, Scientific Affairs at Cures Within Reach. He joined the team in 2024 after graduating from Purdue University with his PharmD. CJ has experience at large and small pharmaceutical companies\, academic health centers and regional hospitals and consulting companies. \nHe supports Cures Within Reach’s funding opportunities\, works with the Grant Review Committee\, manages post-award grants reporting and assists with other scientific initiatives. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Who is this webinar for?\n  \nThis session is open to any patient group interested in learning more about this unique funding opportunity – including patient groups already involved in AI-driven clinical research\, as well as those looking to better understand how AI can support drug repurposing. \nNo technical AI experience is needed – the session is designed to be accessible regardless of where you are on your journey! \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Join this webinar to learn more about this funding call and how your patient group can contribute to a successful application! \n \n \n \n \n \n \n \n \n \n \n \n \n \n Register now\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load.  \nTo secure your order\, please ensure you complete the form in its entirety. URL:https://www.rarebeacon.org/event/cwr-new-funding-call-validating-ai-models-in-drug-repurposing/ LOCATION:Online via Zoom CATEGORIES:Online,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2025/07/CWR-Funding-call-graphic-webinar-9.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20250515T100000 DTEND;TZID=Europe/Paris:20250522T123000 DTSTAMP:20250410T104334Z CREATED:20250410T102848Z LAST-MODIFIED:20250410T104334Z UID:10000200-1747303200-1747917000@www.rarebeacon.org SUMMARY:Building capacity with AI DESCRIPTION:In the last year\, AI has gone from a buzzword to a practical tool that’s reshaping how charities grow and connect. For rare disease patient groups\, it can be a game-changer. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n In this two-part masterclass\, you’ll learn how to use generative AI to craft compelling messages\, boost your fundraising efforts\, and free up time for what matters most: supporting your community. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n How could AI help you?\n \n \n \n \n \n As leaders in the rare disease space\, we know that you face unique challenges in the charity sector. Rare disease patient groups often lack dedicated fundraising and communications teams\, requiring you to balance multiple roles with limited time\, funding\, and resources. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n While AI has the potential to streamline key processes\, the rapid evolution of technology and increasing concerns about risks can make adopting it seem daunting. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n This series is designed to equip you with practical AI tools tailored to help your patient group achieve maximum impact – safely\, ethically\, and without overstretching your resources. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What does the masterclass cover?\n \n \n \n \n \n Join us for a two-part\, interactive masterclass\, specially designed for rare disease patient groups. Together\, we’ll explore how AI can can open up new possibilities to strengthen your fundraising and communications efforts. \nIn a supportive\, small-group setting\, you’ll have plenty of space to ask questions\, share ideas\, and gain practical insights. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Session One:\nDiscover how AI tools like ChatGPT can help you draft persuasive funding proposals\, write compelling stories\, and align your messaging with funder guidelines. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Session Two:\nDive deeper into practical applications – strengthen your storytelling\, tailor communications\, and explore how AI can save you time while staying true to your voice. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Disclaimer: You don’t need to be an AI expert – we’ll start with the basics.  \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the trainer\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Flóra Raffai\nFormer CEO of Beacon (Findacure) Flóra Raffai will be leading this masterclass! Since leaving Beacon\, she has been the CEO of several other small organisations and is able to channel her extensive experience into her role as a coach. \nShe is a member of the European Mentoring and Coaching Council (EMCC)\, holds a Diploma in Transformational Coaching from Catalyst 14 and a Masters in Social Innovation from the University of Cambridge Judge Business School. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Flóra has extensive experience in the rare community and leading small organisations\, delivering trainings on a variety of topics including project management and using AI for small charities. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Deposit system\n \n \n \n \n \n Registering for this online masterclass will require paying a refundable deposit of £15 upon registration. This deposit will be kept safe in Eventbrite until after the training has been completed. \nFollowing the event\, if you have attended at least one of the two sessions\, you will get your full deposit back. We understand that circumstances can change\, especially in the rare disease community. \nShould you register for the masterclass and realise you can no longer attend\, please let us know as soon as possible. We will endeavour to refund your deposit in full provided reasonable notice is given. Reasonable notice for this event is no later than 5 working days before. Find out more about our deposit scheme here. If you have any questions\, please contact projects@rarebeacon.org. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Sign up for the masterclass below!\n \n Sign up for masterclass URL:https://www.rarebeacon.org/event/building-capacity-with-ai/ LOCATION:Online via Zoom CATEGORIES:Masterclass,Online ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2025/04/Building-capacity-with-AI-graphic-new-version-.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20250501T100000 DTEND;TZID=Europe/Paris:20250501T113000 DTSTAMP:20250328T110905Z CREATED:20250328T110341Z LAST-MODIFIED:20250328T110905Z UID:10000199-1746093600-1746099000@www.rarebeacon.org SUMMARY:Strategic planning and sustainability DESCRIPTION:We’re excited to announce our next RareChat!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n In this 90-minute online session\, we invite you to join an interactive discussion on strategic planning for patient groups. \nThis is a valuable opportunity to connect with rare disease patient leaders\, share insights and experiences\, and discuss the challenges you face in business planning and long-term strategy development. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Why does strategic planning matter?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n As patient groups grow\, so do the challenges: hiring staff\, managing finances\, juggling multiple projects\, and ensuring long-term sustainability. \nStrategic planning is crucial to navigating these hurdles\, but knowing where to start\, staying on track\, and adapting to change can be overwhelming\, especially with limited time and resources. \n  \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What we hope you’ll gain:\n\nHear from other rare disease advocates and learn from their experiences.\nFind reassurance in shared journeys and challenges.\nBuild relationships with others in the rare community.\nShape our future training to align with your needs.\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Join us to discuss\n \n \n \n \n \n \n\n\nWhere are you on your strategic planning journey?\n\n\n\n\nWhat challenges or barriers are preventing you from developing or implementing a business plan?\n\n\n\n\nHave unforeseen challenges or opportunities impacted your plans?\n\n\n\n\nWhat training\, resources\, or guidance would help you develop a stronger\, more sustainable strategy?\n\n\n\n\nWhat key elements will you include in your business plan\, and how do they align with your organisation’s broader goals?\n\n\n\n \n \n \n \n \n Come along to share your opinions and hear from your fellow patient group leaders. Spaces are limited so sign up now! \nPlease note: this is a discussion\, not a training event\, which will go to inform Beacon’s plans for future trainings and resources. This meeting will include live transcription and captions.  \n \n \n \n \n \n \n \n \n \n \n \n \n \n Register\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What is a RareChat?\n \n \n \n \n \n RareChat is a chance to connect informally with other patient group leaders and advocates in the rare disease community. Each session will have a carefully selected theme and a Beacon team member to chair the discussion. \nThe sessions are designed to provide a space for the rare community to connect\, share experiences and ideas informally\, as opposed to receiving training on the topic.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load. If you’re facing any difficulties\, you can also register here. URL:https://www.rarebeacon.org/event/strategic-planning-and-sustainability/ LOCATION:Online via Zoom CATEGORIES:Online,RareChat ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2025/03/graphic-strategic-planning.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20250401T110000 DTEND;TZID=Europe/Paris:20250401T123000 DTSTAMP:20250328T155445Z CREATED:20250227T091847Z LAST-MODIFIED:20250328T155445Z UID:10000197-1743505200-1743510600@www.rarebeacon.org SUMMARY:Unlocking research opportunities: Partnering with academics DESCRIPTION:Are you looking to engage in research but don’t know where to start?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Research is a key priority for many patient groups but connecting with the right academic partners is not often straightforward. \nWith limited awareness of rare conditions in academia\, knowing where to start\, initiating conversations\, and building lasting relationships with the right research teams can be challenging.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Why is partnering with academics important?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Collaboration between patient groups and academics is key to speeding up treatments\, improving care\, and keeping research patient-centric. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Academics bring both scientific expertise and the necessary infrastructure to conduct studies\, while patient groups help by: \n \n\nContributing to turning scientific discoveries into real benefits applicable to patients\nLeveraging their established networks to help recruit patients while prioritising patient needs in the research\nStrengthening research proposals with real-world data to enhance funding opportunities\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What will you learn in this webinar?\n \n \n \n \n \n \nHow academic research works and the structures that shape it\nWhere to find researchers working on your condition and how to connect with them\nPractical ways to boost the appeal of your patient group to researchers\nA real-world example of a patient group successfully partnering with academics and getting involved in research\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the speakers\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Mel set up the charity Cure DHDDS after finding out that two of her three children carried an ultra-rare and newly discovered DHDDS genetic mutation which causes a progressive metabolic disorder. \nMel soon realised that there was limited support and research available on the condition\, so with her husband Charlie Dixon founded the charity Cure DHDDS.  \nMel now works full time for this charity\, supporting families and driving research in the hope of expediting a treatment. Mel is also a member of the Genomics England Participant Panel\, CDG UK\, The LSD collaborative and UKRET (UK Rare Epilepsy’s Together). \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Megan joined Beacon in January 2025 as our Senior Scientific Projects Officer. Before joining Beacon\, she completed her Masters by Research and PhD at the University of Birmingham\, studying Human Papillomavirus (HPV) driven cancers. \nMegan then went on to work at the Francis Crick Institute as a postdoctoral researcher\, carrying out lab based research whilst also getting involved in public engagement and outreach activities.  With over 8 years of research experience\, Megan has worked with a range of clinical and non-clinical academics and researchers within universities and biomedical research institutes. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n  María Laura is the Scientific Director of the Ramón y Cajal Health Research Institute (IRYCIS) and a leading figure in biomarker research and translational medicine. \nShe serves as Chair of the Biomarkers Platform at EATRIS and National Scientific Director of EATRIS Spain\, coordinating a network of 33 accredited health research institutes. María Laura brings extensive experience in cancer and kidney disease research as well as multi-omics approaches\, and is actively involved in patient and citizen engagement across Spain and Europe. She is also developing strategies to integrate climate change and health research across Spain\, Europe\, and Latin America. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Join our webinar to confidently build research partnerships and improve care for your community!\n \n \n \n \n \n \n \n \n \n \n \n \n \n Register now\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load.  URL:https://www.rarebeacon.org/event/unlocking-research-opportunities-partnering-with-academics/ LOCATION:Online via Zoom CATEGORIES:Online,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2025/02/Academics-webinar-graphic-1.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20250221T100000 DTEND;TZID=Europe/Paris:20250221T113000 DTSTAMP:20250917T091257Z CREATED:20250123T134204Z LAST-MODIFIED:20250917T091257Z UID:10000191-1740132000-1740137400@www.rarebeacon.org SUMMARY:REMEDi4ALL Webinar Series - Introduction to Clinical Trials DESCRIPTION: URL:https://www.eventbrite.co.uk/e/remedi4all-webinar-series-introduction-to-clinical-trials-tickets-1203580966069?aff=oddtdtcreator LOCATION:Online via Zoom CATEGORIES:Online,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2025/01/Image20250121162715.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20250206T100000 DTEND;TZID=Europe/Paris:20250206T130000 DTSTAMP:20250610T110839Z CREATED:20241211T110639Z LAST-MODIFIED:20250610T110839Z UID:10000187-1738836000-1738846800@www.rarebeacon.org SUMMARY:Imposter syndrome: Turning your inner critic into your biggest cheerleader DESCRIPTION:If you ever find yourself grappling with self-doubt or imposter syndrome\, know that you’re not alone!\nThis masterclass offers an opportunity to connect with others in the rare disease community who share similar experiences and to learn actionable strategies that will help boost your confidence. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Rare disease patient groups play a vital role in driving change for their communities. As healthcare professionals\, industry stakeholders\, and wider society may lack awareness or understanding of specific rare conditions\, the responsibility often falls on patient groups to lead the way. \nThis crucial work frequently places advocates in new and unfamiliar environments\, where they are under pressure to represent their entire community. \n \n \n \n \n \n While striving to achieve advocacy goals\, it’s normal to experience self-doubt and feelings of imposter syndrome. Recognising the value of your voice and building confidence is key to successfully advancing your mission and making an impact. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n To support you in this journey\, we invite you to join our online masterclass on tackling imposter syndrome.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n The masterclass will… \n \n \n \n \n \n \nProvide you with practical strategies to help manage your imposter syndrome.\nTeach you confidence building techniques to help you lead with competence and confidence.\nCover cognitive tools to help turn self-doubt into a motivational force.\nProvide a safe space to connect and share your experiences with other members of the rare disease community.\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Register for the masterclass here\n \n \n \n \n \n \n \n \n \n \n \n \n \n Register\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the trainer\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Fiona Kearns\n \n \n \n \n \n Business Psychologist – Kearns Consultancy\n \n \n \n \n \n As a Business Psychologist\, Fiona boasts a diverse range of qualifications\, including registration with the British Psychological Society for psychometrics and credentials in Neuroscience\, Psychological Safety\, Decision-making\, and Strengths\, as well as Hogan assessments. \nFiona is deeply committed to championing women leaders\, knowing it not only offers a competitive edge but also fosters a better working environment. She created the Strategic Confidence programme to pave the way for Women aiming for C-Suite leadership. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Deposit system \n \n \n \n \n \n Registering for this masterclass will require paying a refundable deposit £15 upon registration. This deposit will be kept safe in Eventbrite until after the training has been completed. Following the event\, if you have attended and signed in\, you will get your full deposit back. \nWe understand that circumstances can change\, especially in the rare disease community. Should you register for the event and realise you can no longer able to attend please let us know as soon as possible. We will endeavour to refund your deposit in full provided reasonable notice is given. Reasonable notice for this event is no later than 3 working days before the event. \nFind out more about our deposit scheme here. \nIf you have any questions\, please contact projects@rarebeacon.org. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load.  URL:https://www.rarebeacon.org/event/imposter-syndrome-turning-your-inner-critic-into-your-biggest-cheerleader/ LOCATION:Online via Zoom CATEGORIES:Masterclass,Online ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/12/FB-imposter-syndorme-PNG-FINAL.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20250129T113000 DTEND;TZID=Europe/Paris:20250129T123000 DTSTAMP:20250123T125630Z CREATED:20250123T124959Z LAST-MODIFIED:20250123T125630Z UID:10000190-1738150200-1738153800@www.rarebeacon.org SUMMARY:Welcome to the REMEDi4ALL Digital Academy DESCRIPTION:Are you ready to embark on an exciting digital learning journey with us? Join us for our online event where we will introduce you to our innovative academy. URL:https://www.eventbrite.co.uk/e/welcome-to-the-remedi4all-digital-academy-tickets-1105480073659?aff=oddtdtcreator#new_tab LOCATION:Online via Zoom CATEGORIES:Online,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2025/01/Intro-to-digital-academy-webinar-graphic.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20241212T110000 DTEND;TZID=Europe/Paris:20250123T123000 DTSTAMP:20250128T122413Z CREATED:20241029T163801Z LAST-MODIFIED:20250128T122413Z UID:10000185-1734001200-1737635400@www.rarebeacon.org SUMMARY:Empowering patient groups in rare disease research funding DESCRIPTION:Join our webinar series to explore the rare disease research funding landscape and discover how patient groups can make a real impact.\n  \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n With 80% of rare conditions still lacking approved treatments\, accelerating research progress is a top priority for many patient organisations. \nFunding is essential to drive these efforts\, and with funders now prioritisng the use of real-world evidence in applications\, patient groups have an even greater opportunity to make a meaningful impact. \nNavigating the complexities of research funding can be challenging. That’s why we’ve developed this two-part webinar series to explore the current funding landscape and show how patient groups can add significant value to research applications. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What to expect from the series\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Part one: Navigating the funding landscape for rare disease research\nThursday 12th December\, 11:00 – 12:30 GMT \n \n \n \n \n \n The first session will offer an overview of the research funding environment\, exploring the types of research projects patient groups can support and who the key funders are. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n In this session\, you’ll learn about:\n \n \n \n \n \n \nThe types of research you could support\, beyond just clinical trials.\n\n\nThe different funding streams available\, from government bodies to commercial funding from industry.\n\n\nThe opportunities and limitations associated with each funding stream.\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet our session one speaker!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Toni Mathieson has been the CEO of Niemann-Pick UK (NPUK) since 2005\, bringing personal insight as a parent of three children with Niemann-Pick type C\, and a professional background in marketing and HR. \nWith 20 years of patient advocacy experience\, Toni has worked with 28 patient groups across 21 countries\, is a founding Director of the International Niemann-Pick Disease Registry\, chair of the UK Lysosomal Storage Disorders Patient Collaborative\, and a Patient Public Voice member with NHS England. \n \n \n \n \n \n \n \n \n \n \n \n \n \n Watch Part one\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Part two: Influencing funding success: How patient groups shape applications\nThursday 23rd January 2025\, 11:00 – 12:30 GMT \n \n \n \n \n \n This session will focus on how patient groups can enhance the impact of funding applications. With more funders prioritising patient involvement and real-world evidence\, we’ll explore how your group can collaborate with researchers to make stronger\, more competitive applications. \n \n \n \n \n \n In this session\, you’ll learn:\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \nHow patient insights can diversify academic ideas and strengthen grant applications.\n\n\nPractical ways to support researchers with patient engagement requirements.\n\n\nWhat steps you can take now to ensure your group is ready to contribute meaningfully to research applications.\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet our session two speakers!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Dr Catriona Manville is the Director of Research Policy at the Association of Medical Research Charities (AMRC).  The AMRC is a membership organisation dedicated to supporting medical research charities in saving and improving lives through research and innovation. \nCatriona’s team leads on how to fund research\, partnerships between funders and policy issues relating to the research landscape\, in universities and the NHS. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Watch Part two\n \n \n \n \n \n \n \n \n \n \n \n Katie Waller is Head of Patient Programmes at The Lily Foundation\, the UK’s largest mitochondrial disease (mito) charity.  \nKatie is a qualified children’s nurse with experience working on early phase clinical trials with people with rare genetic muscle diseases. She is passionate about the importance of including the patient perspective in research design and delivery\, and is a proud advocate for the Mito community on a National and International level.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Who is this webinar for?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n This webinar series will be particularly useful for rare disease patient groups already working with academic teams or research project leads. \nPatient groups wanting to enhance their understanding of the funding landscape are welcome to join too! \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load. If you have difficulties\, you can register directly here.  \n \n \n \n \n \n \n\n\n\n\n\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load. If you experience difficulties\, you can register directly here.  URL:https://www.rarebeacon.org/event/engaging-with-fundraising-for-research/ LOCATION:Online via Zoom CATEGORIES:Online,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/10/Accessing-funding-for-research-3.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20241204T110000 DTEND;TZID=Europe/Paris:20241204T123000 DTSTAMP:20241113T161106Z CREATED:20241113T161057Z LAST-MODIFIED:20241113T161106Z UID:10000186-1733310000-1733315400@www.rarebeacon.org SUMMARY:Connecting beyond borders: International outreach DESCRIPTION:We’re excited to announce our next RareChat!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \nIn this 90-minute online session\, we will be focusing on international outreach. \nThis will be an opportunity for rare disease patient leaders to come in and talk about their experiences\, obstacles\, and explore effective strategies for connecting with both patients and patient groups on a global scale. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Why international outreach matters\nMany rare disease patient groups begin as national organisations\, which usually aligns with their initial priorities and resources. However\, rare disease patients are spread worldwide\, and for many conditions\, there may only be a handful of patients – sometimes just one or two – in any given country. In many cases\, there are no local support groups for these patients. As a result\, international outreach is crucial to: \n\nFinding patients and connecting with other patient organisations to enhance impact and reduce isolation\nFostering meaningful collaboration across borders\, building a strong\, representative\, and inclusive community\n\nHowever\, expanding internationally comes with challenges\, such as limited funding\, cultural differences\, and logistical hurdles. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Join us to discuss\n \n \n \n \n \n \n\nHow other patient groups are successfully extending their reach internationally\nPractical strategies for connecting with patients and organisations beyond national borders\nHow to overcome cultural\, geographical and logistical challenges \nReal-life examples of international outreach efforts\, advice and lessons learnt \n\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Come along to share your opinions and hear from your fellow patient group leaders. Spaces are limited so sign up now! \nPlease note: this is a discussion\, not a training event\, which will go to inform Beacon’s plans for future trainings and resources. This meeting will include live transcription and captions.  \n \n Register\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What is RareChat?\n \n \n \n \n \n RareChat is a chance to connect informally with other patient group leaders and advocates in the rare disease community. Each session will have a carefully selected theme and a Beacon team member to chair the discussion. \nThe sessions are designed to provide a space for the rare community to connect\, share experiences and ideas informally\, as opposed to receiving training on the topic. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load. If you’re facing any difficulties\, you can also register here. URL:https://www.rarebeacon.org/event/connecting-beyond-borders-international-outreach/ LOCATION:Online via Zoom CATEGORIES:Online,RareChat ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/11/International-Outreach-RareChat-1.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20241127T103000 DTEND;TZID=Europe/Paris:20241129T123000 DTSTAMP:20251210T105612Z CREATED:20241017T114002Z LAST-MODIFIED:20251210T105612Z UID:10000182-1732703400-1732883400@www.rarebeacon.org SUMMARY:Introduction to charity finances DESCRIPTION:Beacon is excited to announce our upcoming workshop for rare disease patient groups! This introductory training is designed for rare leaders without a finance background who are looking to learn the essentials of managing their rare disease charity’s finances. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Why attend this workshop?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Managing finances is a huge part of running a charity. It can be incredibly time-consuming and ensuring you adhere to the legal levels of compliance can be worrisome for leaders who may not have previous experience in this area. \nOur workshop is designed to make financial management more approachable\, equipping you with practical tools and clear guidance to manage your charity’s finances confidently and effectively. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What will the workshop cover?\n \n \n \n \n \n Spread across three sessions\, this interactive workshop will provide a comprehensive guide to the essential elements to consider when managing charity finances. \nGain practical tools and access free resources to strengthen your charity’s financial health! \n \n \n \n \n \n Session 1: 27th November 2024\, 10:30am – 12:30pm\n \n \n \n \n \n Navigating the legal requirements \n Learn the importance of managing the legal and operational side of your charity’s finances. \nWe will cover: \n\nAn introduction to the role of finance in charities\, including the legal and governance requirements.\n\n \n\nUnderstanding what constitutes an effective finance function\, recognising the different roles within that function\, and ensuring clear communication by addressing jargon.\n\n \n\nExploration of the terminology and tools of risk management\, what you are required to do for compliance purposes and how you can make risk management work for your organisation.\n\n \n \n \n \n \n \n \n Session 2: 28th November 2024\, 10:30am – 12:30pm\n \n \n \n \n \n Practical financial planning \n This session will equip you with the essential building blocks of financial management. \nWe will cover: \n\n\nAn introduction to the principles of budgeting and forecasting\, including an exploration of financial management tools and consideration of how to present data effectively.\n\n \n\nCoverage of the legal and best practice position when it comes to reserves\, exploration of how you might calculate them and consideration of wider communication issues when it comes to reserves.\n\n \n \n \n \n \n Session 3: 29th November 2024\, 10:30am – 12:30pm\n \n \n \n \n \n Understanding financial monitoring\n Learn how your financial information is reported to the board\, understanding governance responsibilities and communicating with stakeholders. \nWe will cover: \n\n\nThe requirements of a trustees’ annual report\, considering performance and impact reporting.\n\n\nWhat the Statement of Recommended Practice requires of charities.\n\n\nAn explanation of the different types of accounts you might encounter\, what makes up statutory accounts – how to understand them and areas of interest to users of accounts.\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Register here!\n \n \n \n \n \n This workshop is tailored toward rare disease charity leaders who do not come from a financial background. \nThree interactive sessions will take you through the basics of what you need to know for effective financial management. \nThey will cover how to navigate the legal and governance requirements and delve into the basics of financial planning and monitoring. \nThese topics will be covered in an accessible and interactive format to ensure you come away with the tools you need to feel confident overseeing your charities finances. \n \n Sign up here!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the trainer!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Caron joined CFG in 2010 from the ICAEW where she was Head of the Charity and Voluntary Sector. \nIn addition to supporting a number of small charities and community organisations\, Caron has been a member of the NCVO’s National Assembly and the Charities SORP Committee. \nShe has sat on a number of government working parties\, is a non-executive director of the Lending Standards Board\, a member of the Church of England Pension Board’s Audit and Risk Committee\, and former Chair of the Board of the Directory of Social Change. \nShe was also Chair of her local hockey club. She was named in the top 30 UK social influences in Risk\, Compliance and Regtech 2017. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Deposit system\n \n \n \n \n \n Registering for this online workshop will require paying a refundable deposit of £15 upon registration. This deposit will be kept safe in Eventbrite until after the training has been completed. \nFollowing the event\, if you have attended at least two of the three sessions\, you will get your full deposit back. We understand that circumstances can change\, especially in the rare disease community. \nShould you register for the workshop and realise you can no longer attend\, please let us know as soon as possible. We will endeavour to refund your deposit in full provided reasonable notice is given. Reasonable notice for this event is no later than 3 working days before. Find out more about our deposit scheme here. If you have any questions\, please contact projects@rarebeacon.org. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Register for workshop here!\n \n \n \n \n \n \n \n \n \n \n \n \n \n Register\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load.  URL:https://www.rarebeacon.org/event/introduction-to-charity-finances/ LOCATION:Online via Zoom CATEGORIES:Online,Workshop ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/10/finances-24-graphic-2.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20241024T103000 DTEND;TZID=Europe/Paris:20241024T120000 DTSTAMP:20241003T102117Z CREATED:20241003T095955Z LAST-MODIFIED:20241003T102117Z UID:10000181-1729765800-1729771200@www.rarebeacon.org SUMMARY:Running peer support programmes DESCRIPTION:We’re excited to announce our next RareChat event!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \nIn this 90-minute online event\, we will be focusing on different types of ”Peer Support Programmes”. \nWe will facilitate a conversation among patient group leaders and advocates –especially those experienced running peer support programmes\, and those that have been part of them in any form! \nWe will talk about impact and experiences\, challenges and advice for driving the programme’s success\, both as organisers and participants. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n About the Event\nRare disease patient groups often operate with limited resources and small teams\, making peer support a crucial\, low-cost solution for building connections\, learning from others\, and overall community support. Peer support programmes provide critical emotional and professional guidance. While they can adopt many shapes\, they all significantly help: \n\n\nBuild trust and connect patients and caregivers to others with similar health experiences \n\n\nCreate a sense of community and reduce social isolation \n\n\nIncrease confidence and develop personal and professional skills of those involved \n\n\nHowever\, organising and managing these programmes comes with its own set of challenges\, including funding\, personal commitments\, personal boundaries and fidelity to the programmes. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Join us to discuss\n \n \n \n \n \n \n\nDifferent types of peer support programmes and how they benefit our community\nChallenges and best practices for organising\, managing and participating in these programmes\nReal-life experiences and insights from patient group leaders and advocates\nThe impact these programmes can have on wellbeing\, confidence\, and skill development\n\n\nCome along to share your opinions and hear from your fellow patient group leaders. Spaces are limited so sign up now! \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: this is a discussion\, not a training event\, which will go to inform Beacon’s plans for future trainings and resources. This meeting will include live transcription and captions.  \n \n Register\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What is RareChat?\n \n \n \n \n \n RareChat is a chance to connect informally with other patient group leaders and advocates in the rare disease community. Each session will have a carefully selected theme and a Beacon team member to chair the discussion. \nThe sessions are designed to provide a space for the rare community to connect\, share experiences and ideas informally\, as opposed to receiving training on the topic. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load. If you’re facing any difficulties\, you can also register here. URL:https://www.rarebeacon.org/event/running-peer-support-programmes/ LOCATION:Online via Zoom CATEGORIES:Online,RareChat ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/10/Creating-accessible-events-on-a-budget-RARECHAT-3.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20241017T110000 DTEND;TZID=Europe/Paris:20241114T123000 DTSTAMP:20250610T095612Z CREATED:20240725T095746Z LAST-MODIFIED:20250610T095612Z UID:10000173-1729162800-1731587400@www.rarebeacon.org SUMMARY:Hire with impact: recruitment training for rare disease patient groups DESCRIPTION:Beacon is delighted to announce our next masterclass for rare disease patient groups! This training is specifically for groups who are ready to hire their first paid member of staff or looking to grow their team! \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Why employ paid staff?\n \n \n \n \n \n Employing staff can have a huge impact on a patient group’s ability to achieve their advocacy goals. By managing administrative and operational tasks\, staff enable groups to undertake ambitious projects and expand their reach\, better serving their community and addressing patient needs. \nThis also eases the burden on individual leaders\, reducing burnout. Moreover\, new staff bring fresh expertise and perspectives\, helping patient groups advocate more effectively and make a greater impact on the lives of those they represent. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Why attend this masterclass?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Hiring staff is a decision that requires careful consideration. Leaders of rare disease patient groups are often individuals living with the condition or their family members\, meaning their drive for change is deeply personal. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Transitioning to paid staff can be daunting\, as it’s crucial to hire individuals who grasp the personal significance and gravity of the group’s mission. Beacon recognises this challenge and is hosting this masterclass to equip patient groups with the tools they need to find the right person. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What does the masterclass cover?\n \n \n \n \n \n Spread across four interactive virtual sessions\, this comprehensive course will equip you with the skills and knowledge needed to successfully navigate the recruitment process. \nThe masterclass will be conducted in a small group setting\, providing ample opportunities for personalised interaction with our expert trainers. \nAttendees will actively participate in creating job materials during the sessions and receive constructive feedback to refine their approach. Don’t miss this chance to transform your organisation by adding the right talent to your team!\n \n \n \n \n \n Session one – 17th October\, 11:00 – 12:30 \n \n \n \n \n \n Creating the perfect job role\n Learn how to define the perfect job role for your organisation’s needs. We’ll guide you through crafting detailed job descriptions and personal specifications that attract the right candidates.   \n \n \n \n \n \n Session two – 24th October\, 11:00 – 12:30 \n \n \n \n \n \n Finding the best candidates\n During this session our trainers will equip you with the skills you need to get your job in front of the right people. \nWe will cover: \n\nHow to write a job advert that will help you attract the right candidates\nHow to develop a recruitment pack\nWhere to advertise your role\nHow to use social media and networking to promote the role\n\n \n \n \n \n \n Session three – 7th November\, 11:00 – 12:30\n \n \n \n \n \n Shortlisting and interviewing \n Master the art of shortlisting candidates and conducting insightful interviews. Gain confidence in your ability to choose the best fit for your team.\n \n \n \n \n \n Session four – 14th November\, 11:00 – 12:30\n \n \n \n \n \n Onboarding and retention\n Ensure a smooth transition for your new hire with effective onboarding practices. Learn how to create a supportive environment that fosters long-term retention and growth.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Sign up here!\n \n \n \n \n \n This masterclass is specifically designed for organisations who are ready to recruit in the near future. Attendees will be working on developing recruitment materials during the sessions\, therefore\, to get the most out of this opportunity it is important to have a recruitment goal in mind. As spaces are limited\, we will be prioritising groups that are the right stage in their recruitment journey. If this sounds like you\, sign up here! \n \n Sign up for masterclass\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Is this masterclass for me?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n It will cover…\nA step by step guide on how to recruit your first member of staff \n \n \n \n \n \n \n \n \n \n \n \n It will not cover…\nHow to fundraise for paid memebers of staff \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the trainers\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Katy Woodward\n \n \n \n \n \n  I am a Senior Talent Acquisition Coordinator at Costello Medical. I joined the company 3 years ago and in my role\, I work closely with our Leadership team to support them to grow their teams\, which includes developing job adverts\, marketing and advertising vacancies and overseeing the recruitment process. I also manage our candidate marketing via our LinkedIn page\, as well as contributing to projects to continually evolve and improve our recruitment processes. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Mikaela Lines\n \n \n \n \n \n Hello\, I’m Mikaela\, Senior Onboarding and Training Coordinator for the Training team at Costello Medical. I play a significant role in the induction and learning development process. One of my favourite aspects of my role is welcoming new starters on their first day and seeing them thrive throughout their training journey. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Rose Cahill\n \n \n \n \n \n Hi\, I’m Rose\, a People Team Administrator at Costello Medical. Part of my role is communicating with new starters before their first day and to ensure we comply with legal requirements\, including employment contracts and right-to-work checks. I also play a key role in creating job descriptions and recently conducted a project to revamp all our existing ones! \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Deposit system\n \n \n \n \n \n Registering for this online masterclass will require paying a refundable deposit of £20 upon registration. This deposit will be kept safe in Eventbrite until after the training has been completed. \nFollowing the event\, if you have attended at least three our of the four sessions\, you will get your full deposit back. We understand that circumstances can change\, especially in the rare disease community. \nShould you register for the masterclass and realise you can no longer attend\, please let us know as soon as possible. We will endeavour to refund your deposit in full provided reasonable notice is given. Reasonable notice for this event is no later than 3 working days before. Find out more about our deposit scheme here. If you have any questions\, please contact projects@rarebeacon.org. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Sign up for the masterclass below!\n \n Sign up for masterclass URL:https://www.rarebeacon.org/event/hire-with-impact-recruitment-training-for-rare-disease-patient-groups/ LOCATION:Online via Zoom CATEGORIES:Masterclass,Online ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/07/Recruitment-FB.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20241011T110000 DTEND;TZID=Europe/Paris:20241011T123000 DTSTAMP:20250610T095855Z CREATED:20240815T093855Z LAST-MODIFIED:20250610T095855Z UID:10000178-1728644400-1728649800@www.rarebeacon.org SUMMARY:Get ready to recruit: How to prepare your charity for growth DESCRIPTION:Beacon is delighted to announce our next webinar! This session is for rare disease patient group leaders who are thinking about recruiting in the future and want to learn the first steps. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note\, this webinar will focus on the essential steps to take before starting your recruitment journey. If your organisation is ready to start hiring and you’re seeking practical guidance on the recruitment process itself\, consider joining our upcoming masterclass: Hire with impact: Recruitment training for patient groups. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Are you looking to take your patient group to the next step?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n If you’re looking to grow and professionalise your rare disease organisation\, then taking on paid staff might be your next move. \nBringing on paid staff can be a game-changer for your charity\, allowing you to manage and organise your resources more effectively. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n By hiring dedicated employees to manage daily operations and administrative tasks\, your organisation can take on more ambitious projects\, expand its reach\, and better serve your communities. \nPaid staff also bring fresh perspectives and specialised skills\, enhancing your strategies and overall effectiveness while easing the burden on individual leaders. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Investing in staff is about more than just getting help – it’s about strategically positioning your organisation to achieve greater impact and sustainability in your advocacy work. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Why attend the webinar?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Beacon recognises that the process of preparing to recruit can be daunting. We are hosting this webinar to demystify the recruitment process\, so you can lay the essential groundwork required to begin growing your charity. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What will we cover?\n \n \n \n \n \n Identifying the skills you need:\n\nLearn how to conduct a skills audit to evaluate  your current team’s capabilities\, this will help to identify the key competencies and experience needed for a role\, and will guide decisions on whether to hire full-time\, part-time\, or on a temporary basis.\n\n \n \n \n \n \n Navigating the legal requirements:\n\nAn introduction to the policies and procedures required to comply with employment laws and regulations\nAdvice on ensuring inclusive hiring practices\n\n \n \n \n \n \n Planning financially\n\nWhat to consider when creating your budget e.g salary\, pension\, equipment\, insurance\nTips on planning for ongoing expenses and future growth\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n About our webinars\n \n \n \n \n \n All Beacon’s webinars are delivered online in Zoom’s webinar format. They are designed as a general overview of a topic to ensure all attendees have a good level of knowledge. There is always a chance to ask questions at the end\, and they are sometimes delivered as part of a series to cover different topics within one area. \nThis webinar will equip patient group leaders with the essential elements of preparing to hire for a patient organisation. It will be held online on Zoom. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Register here\n \n \n \n \n \n This webinar is designed for rare disease patient group leaders. \nPlease note: our ticketing provider\, Eventbrite\, has introduced a new feature that allows you to reserve tickets before filling out the order form on the next page. To secure your tickets\, please make sure to complete the form in its entirety. \n \n \n \n \n \n \n \n \n \n \n \n \n \n Register\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the trainer\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Eileen Browne\nTraining Consultant\nDirectory of Social Change (DSC)\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Eileen joined DSC in January 2018\, and having worked within the commercial teams in charities and social enterprises brought a wealth of experience of generating income and delivering high quality services into the DSC Sales team. \nEileen’s many years’ experience as a trainer in both sectors was then employed as she became a member of the Training team\, designing\, updating\, producing\, retailing\, facilitating and delivering courses and workshops. \nEileen enjoys being part of a team that is genuine\, professional and totally committed to building sustainable charities with well trained\, psychologically safe\, confident trustees\, employees and volunteers. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Sign up for the webinar below!\n \n Sign up for webinar\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load.  URL:https://www.rarebeacon.org/event/get-ready-to-recruit-how-to-prepare-your-charity-for-growth/ LOCATION:Online via Zoom CATEGORIES:Online,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/08/Get-ready-to-recruit-graphic-PNG.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20240924T110000 DTEND;TZID=Europe/Paris:20240924T123000 DTSTAMP:20240927T140718Z CREATED:20240808T085810Z LAST-MODIFIED:20240927T140718Z UID:10000175-1727175600-1727181000@www.rarebeacon.org SUMMARY:The fundamentals of fundraising without a fundraiser DESCRIPTION:Beacon is delighted to announce our next webinar! This session is for rare disease leaders responsible for fundraising for their organisation who don’t come from a fundraising background. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Fundraising in the current climate is incredibly challenging. This is exacerbated for rare disease patient groups who often don’t have a dedicated fundraiser or specific fundraising expertise with their team. \nWe know that rare disease leaders are innovative\, resourceful and are always striving to secure funding for their advocacy goals. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n This webinar will provide advice and guidance to help leaders tap into the resources they already have to help them meet their fundraising targets. \nWhile there are no quick and easy wins in fundraising\, a strategic approach can make all the difference. This session will introduce you to effective time management\, planning\, and leveraging your connections to achieve your income goals.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n By the end of this webinar\, you will have practical knowledge and actionable steps to confidently embark on your fundraising journey. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What will the webinar cover?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n How to choose the right fundraising stream\n \n \n \n \n \n We will explore and break down the time and resources required and the potential return on investment for the following funding streams: \n\nCommunity funding\nTrusts and foundations\nCorporate funding\nPharmaceutical funding\nMajor donors\n\nThis will help you identify which fundraising approach aligns best with your organisation’s skills\, timeframes and resources. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Laying the foundations for success\n \n \n \n \n \n Learn how to compile essential background information that will help you plan efficiently\, identify key relationships\, and align your resources. By having this foundational work in place\, you will know clearly what you are doing\, where you are going\, and who you are asking for support. \nIntroductions to: \n\nNetwork mapping \nStructuring project plans\nDemonstrating need and impact\n\nThis will help you clearly define your objectives and target the right supporters. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n About our webinars\n \n \n \n \n \n \n All Beacon’s webinars are delivered online in Zoom’s webinar format. They are designed as a general overview of a topic to ensure all attendees have a good level of knowledge. There is always a chance to ask questions at the end\, and they are sometimes delivered as part of a series to cover different topics within one area. \nThis webinar will equip patient group leaders with the essential elements of fundraising for a patient organisation. It will be held online on Zoom.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Register here\n \n \n \n \n \n This webinar is specifically designed for patient group leaders who are struggling to fundraise due to the lack of a dedicated fundraiser. It will cover the foundational elements required for fundraising for a patient organisation. \nIf this sounds like you\, sign up here! \n \n Sign up for webinar\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the trainers\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Beacon’s very own fundraising team will be leading this webinar. Emma and Faith have a combined 19 years experience in community\, corporate\, and trusts and foundations fundraising.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Emma Damian-Grint \nFundraising Manager\nEmma has worked in fundraising for over 15 years. Since joining Beacon in 2023\, Emma has helped shape our fundraising and communications strategy. She is responsible for generating new and sustainable income streams for the organisation and meets regularly with funders to understand their priorities and create bespoke applications to align with their work. She helps steward existing funding partners and identifies new potential leads to maximise income for the charity. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Faith Walpole \nSenior Fundraising Office\nFaith joined the charity sector 2 years ago following her time at university studying Geography. As Beacon’s Senior Fundraising Officer\, she is responsible for identifying and managing grant applications and strategically supporting the fundraising team. She works closely with a variety of stakeholders to form and maintain relationships and regularly attends a wide range of events to meet our beneficiaries and funders.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Sign up for the webinar below!\n \n \n \n \n \n \n \n \n \n \n \n \n \n Sign up for webinar URL:https://www.rarebeacon.org/event/the-fundamentals-of-fundraising-without-a-fundraiser/ LOCATION:Online via Zoom CATEGORIES:Online,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/08/Fundraising-graphic-PNG-1.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20240711T110000 DTEND;TZID=Europe/Paris:20240711T123000 DTSTAMP:20240806T094328Z CREATED:20240619T150900Z LAST-MODIFIED:20240806T094328Z UID:10000172-1720695600-1720701000@www.rarebeacon.org SUMMARY:Creating accessible events on a budget DESCRIPTION:We’re excited to announce our next RareChat event!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \nIn this 90-minute online event\, we will be focusing on “Creating accessible events on a budget’’. \nIn this RareChat\, we will facilitate a conversation among patient group leaders – both those experienced with events and first-timers. \nThey will share their experiences\, tips and cost-effective solutions for making events more accessible and inclusive\, without breaking the bank. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n About the Event\nOne in four people live with some form of disability\, making it crucial to organise inclusive events that adapt to diverse needs. This is especially important in the rare disease community\, where attendees may require specific accommodations such as dietary considerations\, sensory accessibility\, and mobility support. \nAdditionally\, it is essential to consider accommodations beyond physical and medical needs\, such as familial or cultural requirements. Adding to the challenge\, patient support organisations often have limited resources\, making accessibility and inclusivity incredibly difficult. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Join us to discuss\n \n \n \n \n \n \nPractical ideas for ensuring event accessibility on a budget\nThe experiences of other patient group leaders and advocates\nCommon challenges when balancing accessibility on a budget\, and how they can be overcome\nLow-cost and free resources available for event planners\n\nCome along to share your opinions and hear from your fellow patient group leaders. Spaces are limited so sign up now! \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: this is a discussion\, not a training event\, which will go to inform Beacon’s plans for future trainings and resources. This meeting will include live transcription and captions.  \n \n Register\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What is RareChat?\n \n \n \n \n \n RareChat is a chance to connect informally with other patient group leaders and advocates in the rare disease community. Each session will have a carefully selected theme and a Beacon team member to chair the discussion. \nThe sessions are designed to provide a space for the rare community to connect\, share experiences and ideas informally\, as opposed to receiving training on the topic. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load. If you’re facing any difficulties\, you can also register here. URL:https://www.rarebeacon.org/event/creating-accessible-events-on-a-budget/ LOCATION:Online via Zoom CATEGORIES:Online,RareChat ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/06/Creating-accessible-events-on-a-budget-RARECHAT-2-1.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=UTC:20240501T110000 DTEND;TZID=UTC:20240619T123000 DTSTAMP:20241029T121346Z CREATED:20240327T095030Z LAST-MODIFIED:20241029T121346Z UID:10000164-1714561200-1718800200@www.rarebeacon.org SUMMARY:Decoding Diagnostics: Part one and Part two DESCRIPTION:Join our brand new training series – Decoding Diagnostics\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n In the world of rare diseases\, navigating the diagnostic journey can often feel like a complex puzzle. \nWith 72% of rare diseases being genetic in nature\, obtaining an accurate diagnosis is crucial for patients and their families. However\, the landscape of genetic testing and diagnosis can be daunting\, filled with new terminology and processes. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Taking place across May and June 2024\, our Decoding Diagnostics series will shed light on this journey\, providing clarity and guidance to individuals and groups within the rare disease community. \nThrough a series of webinars and discussion sessions\, we’ll explore the fundamental principles of genetic testing\, delve into the methods and applications available\, and provide practical insights on accessing\, interpreting and supporting genetic diagnostic results. \nThis free series is primarily for rare disease patient groups\, however anyone with an interest in improving their knowledge on diagnostics is welcome to attend. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What to expect from the series\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Part one: Exploring the world of genetic testing\nPart one of our Decoding Diagnosis series will provide an overview of genetics and genetic testing. Before participating in these sessions\, we highly recommend completing our free “Introduction to genetics” course on The Resources Hub.  \nEach session will take place 11am – 12:30pm BST (GMT+1). \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n 11am – 12:30pm\, 1st May 2024 – The fundamentals of genetics and genetic testing (webinar)\nExplore the basics of genetic testing and rare disease diagnostics. Learn about DNA\, genes\, and how changes in these components can lead to a rare condition. Discover the journey of DNA from clinic to lab. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n 11am – 12:30pm\, 8th May 2024 – Understanding the genetic testing landscape (webinar)\nDiscover the various genetic tests available and their insights into an individual’s genome and disease. Learn about the information each test provides\, who they are best suited for\, and how to interpret results for patients and clinical teams. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n 11am – 12:30pm\, 22nd May 2024 – Discussion and Q&A\nJoin our interactive discussion on advancements in genetic testing and their impact on patient experiences. Hear from experts in result analysis and communications and individuals who have navigated the genetic testing journey. Ask your questions and get some answers! \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n These sessions are like building blocks\, with each adding new layers to your knowledge. As a result\, we recommend participants endeavour to attend all sessions. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Part two: Navigating a genetic diagnosis\nPart two of our Decoding Diagnosis series will focus on the pathways to diagnosis in the UK and the real world implications receiving a diagnosis has on patients and their families.   \nEach session will take place 11am – 12:30pm BST (GMT+1).  \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n 11am – 12:30pm\, 5th June 2024 – Accessing genetic testing in the UK (webinar)\nGain an overview of the genetic testing pathway in the UK\, including key players and steps. Discover how patient groups have influenced and improved genetic diagnosic services. Learn about expectation management and support options for patients when the journey isn’t straightforward. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n 11am – 12:30pm\, 12th June 2024 – What happens after diagnosis? (webinar)\nExplore the practical implications of receiving a genetic diagnosis and what comes next. Demystify the genetic counselling process and learn how genetic tests inform treatment and care pathways. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n 11am – 12:30pm\, 19th June 2024 –  Discussion and Q&A\nJoin our interactive discussion on implementing effective communication in the diagnostic journey and beyond. Hear insights from genetic counsellors\, clinicians\, and individuals who have experienced the importance of genetic testing for timely treatment. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n These sessions are like building blocks\, with each adding new layers to your knowledge. As a result\, we recommend participants endeavour to attend all sessions. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Registration is now open for both parts of our Decoding Diagnostics series. Sign up now to secure your spot!\n \n \n \n \n \n \n \n \n \n \n \n \n \n Register for Part one\n \n \n \n \n \n \n \n Register for Part two\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load. If you have difficulties\, you can register directly here.  \n \n \n \n \n \n \n\n\n\n\n\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load. If you experience difficulties\, you can register directly here.  URL:https://www.rarebeacon.org/event/decoding-diagnostics-part-one-and-two/ LOCATION:Online via Zoom CATEGORIES:Online,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/03/Diagnostics-Promo.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20240313T190000 DTEND;TZID=Europe/Paris:20240313T203000 DTSTAMP:20240904T102832Z CREATED:20240126T103118Z LAST-MODIFIED:20240904T102832Z UID:10000091-1710356400-1710361800@www.rarebeacon.org SUMMARY:Beyond The Student Voice Prize DESCRIPTION:We’re delighted to announce our third Beyond the Student Voice Prize virtual event.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Join us to celebrate the end of another highly successful Student Voice Prize. \nThis year’s competition saw more entries than ever before from 30 different universities across 18 countries. We are so grateful to the students and patient groups who contributed to this success. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n This event is an opportunity for us to share these achievements and showcase some inspiring case studies. We will also highlight opportunities for students to continue their involvement in rare diseases going forward. \nWe hope that for many students this competition has marked the beginning of a continued interest in rare diseases that could span their career and make a real difference to the lives of people living with rare conditions. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n During this event you will:\n \n \n \n \n \n \nHear stories from rare disease patients and advocates\nConnect with students and the rare disease community\nHear from 2023 competition winners\nLearn about opportunities to get involved with rare diseases going forward\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Who is this event for?\n \n \n \n \n \n \nMedical and science students who have entered The Student Voice Prize in the past or would be interested to in the future\nMedical and science students interested in learning more about rare conditions and getting involved in the community\nRare disease patient group leaders interested in SVP\, even if you haven’t been involved in the past\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Why should you attend?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Rare diseases are collectively common\, meaning you are likely to come across them in your medical career. \nLearning about them early better prepares you as a future clinician and results in better outcomes for individuals diagnosed and living with rare conditions. \n \n \n \n \n \n \n \n \n \n \n \n Genetic medicine is becoming increasingly prevalent worldwide. The UK specifically is driving to bring genomic testing to the heart of the healthcare system. \nThis rise will undoubtedly increase the diagnosis of rare diseases and this population of patients will need doctors educated in rare diseases\, who know how to help them. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n The Student Voice Prize is much more than just a competition. It has proven itself to be a gateway for many medical students\, nurses and scientists who want to engage with patients from across the medical spectrum\, particularly in rare diseases. \nThis is your chance to go beyond and become an advocate for a large\, but poorly represented community and help make a real difference in the lives of rare disease patients and their families. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Spaces are limited\, don’t wait to claim your free ticket!\n \n \n \n \n \n If you are having trouble registering via the button below\, you can register directly on Eventbrite here. \n \n Register\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n The Student Voice Prize 2023 is proudly sponsored by emotive. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n\n\n\n\n\n \n \n \n \n \n Please note: the ticket window may take a few seconds to load.  URL:https://www.rarebeacon.org/event/beyond-the-student-voice-prize/ LOCATION:Online via Zoom CATEGORIES:Online,Student Voice Prize ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/01/Beyond-SVP-graphic-1.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20240312T110000 DTEND;TZID=Europe/Paris:20240326T130000 DTSTAMP:20251204T161752Z CREATED:20240118T114124Z LAST-MODIFIED:20251204T161752Z UID:10000089-1710241200-1711458000@www.rarebeacon.org SUMMARY:Building rare resilience DESCRIPTION:We are delighted to be re-running our 2022 workshop on Building Rare Resilience\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Leading a rare disease community is unique in its demands and can be both rewarding and challenging. Rare leaders\, who often work alone\, assume multifaceted roles within their communities. \nThey serve as experts in their respective conditions\, act as catalysts for research initiatives\, and frequently serve as a crucial support system for patients and families navigating the complexities of understanding and accepting their diagnoses. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Being a rare leader demands a significant investment of personal time and energy\, and leaders’ mental health can often take a back seat to the needs of their community. \nThis three-part workshop aims to give patient group leaders the space to focus on their own mental health\, after all\, you can’t pour from an empty cup. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n The workshop will be led by mental health experts Rareminds and will look at:\n\nboundary setting\nmanaging expectations\ndealing with burnout\n\nThrough activities and discussion\, you will learn practical tools and strategies to look after your own well-being as a rare leader. \n \n \n \n \n \n This workshop is a repeat\, spaces are limited and priority will be given to individuals taking part for the first time. While attending all three sessions is recommended for the optimal experience\, each session is designed to stand alone\, allowing you to select the ones most relevant to you. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Session one: How did I get into this? Being a community leader and having a life\nTuesday 12th March\, 11:00 – 13:00\nIn this series of workshops\, we move the focus away from the needs of your community to your own well-being needs as a Patient Leader. \n \n \n \n \n \n The workshop will explore:\n \nHow ‘lived experience’ can be a great asset to your role\, but can also bring challenges\nThe common challenges and pressures of running a small rare disease patient organisation\nHow to find\, or keep\, boundaries between your work as a patient leader (paid or unpaid) and your personal life\nWays to maintain ‘work-life’ balance\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Session two: Stuck in the middle – managing expectations and competing demands\nTuesday 19th March\, 11:00 – 13:00\nWhen running a patient community\, it can sometimes feel like it becomes all about what you ‘aren’t doing’ rather than celebrating and recognising your achievements as a Leader. \n \n \n \n \n \n The workshop will explore:\n \nThe common characteristics and experiences of Rare Leaders\nManaging the expectations and demands of stakeholders – whether it’s your trustees\, your community\, industry/healthcare professionals\, or your own!\nStrategies for keeping your own emotional well-being ‘in the picture’\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Session three: Avoiding burnout\nTuesday 26th March\, 11:00 – 13:00\nThose living with rare conditions often experience a lot of unmet needs and correspondingly high emotional distress. Rare Leaders are often highly motivated to not disappoint the communities they serve\, but can then run the risk of ‘burning out’ as a result. \n \n \n \n \n \n The workshop will explore:\n \nWhat is burnout?\nThe importance of ‘pacing’ (personally and organisationally)\nExplore ways to prevent\, or recover from\, burnout\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the trainer\n \n \n \n \n \n All workshops are facilitated by Kym Winter\, CEO and Clinical Director\, Rareminds CIO\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Kym is the Clinical Director and Founder of Rareminds\, a UK based charity providing specialist psychotherapy\, counselling and emotional well-being resources to rare disease communities. \nA psychotherapist for nearly 30 years across the NHS\, higher education and UK third sector\, she has worked with individuals\, couples\, leaders and healthcare professionals impacted by rare diseases since 2013. \nShe also has lived experience of a rare genetic condition in her immediate family. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n  \nOur new deposit scheme\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Registering for this workshop will require paying a refundable deposit of £5 per session upon registration. This deposit will be kept safe in Eventbrite until after the training has been completed. \nFollowing the event\, if you have attended and signed in\, you will get your full deposit back. \nWe understand that circumstances can change\, especially in the rare disease community. Should you register for the event and realise you can no longer able to attend please let us know as soon as possible. \nWe will endeavour to refund your deposit in full provided reasonable notice is given. Reasonable notice for this event is no later than 3 working days before. \nFind out more about our deposit scheme here. If you have any questions\, please contact projects@rarebeacon.org. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Spaces are limited so claim yours now to avoid missing out!\n \n Register here\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n\n\n\n\n \n \n \n \n \n Please note: the ticket window may take a few seconds to load.  URL:https://www.rarebeacon.org/event/building-rare-resilience/ LOCATION:Online via Zoom CATEGORIES:Online,Workshop ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/01/BRR24-facebook.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20240222T110000 DTEND;TZID=Europe/Paris:20240222T123000 DTSTAMP:20240813T110423Z CREATED:20240125T074323Z LAST-MODIFIED:20240813T110423Z UID:10000088-1708599600-1708605000@www.rarebeacon.org SUMMARY:Boost your patient group's productivity using AI DESCRIPTION:Boost your patient group’s productivity using AI \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n AI has dominated conversations over the past year. So much so\, that Collin’s Dictionary even made their word of 2023 ‘artificial intelligence’. \nBut what is AI and how is it relevant to rare disease patient groups? Let us tell you! \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Too often\, patient group leaders have a mile-long to-do list and feel pressured to do everything\, singlehandedly\, all at once. AI tools can alleviate a lot of this burden; providing a free helping hand with generating ideas\, writing copy for emails\, social media posts\, websites and funding applications\, and even helping with producing graphics. It seems that the possibilities are endless! \nHowever\, getting the most out of these tools takes experience. Is taking the time to learn these new tools worth it? How can I be sure the information is correct? How can I get more helpful answers out of AI?  \nThis webinar will equip patient group representatives with more know-how of when and how to use AI\, hopefully boosting productivity and saving precious time! \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n  \nWhat is AI?\n  \nArtificial Intelligence (or AI) is the ability of a digital computer or computer-controlled robot to perform tasks commonly associated with intelligent beings. Examples include ChatGPT\, Bard etc. These models are being developed all the time\, and are currently free to use for all (just requiring an account). \nAI can be used to write copy for any platform\, from social media to fundraising bids\, and is able to mimic the way you already write! \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Why is AI important?\n  \nIn the hectic online world\, utilising AI helps patient groups meet their aims by: \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Writing more quickly and creatively \n \n \n \n \n \n \n \n \n \n \n \n Saving time on routine tasks so you can focus on your community \n \n \n \n \n \n \n \n \n \n \n \n Generating images and graphics \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What to expect from the webinar?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n This webinar will teach you:\n  \n\n\nWhat AI is \n\n\nHow to write effective prompts for different types of AI \n\n\nHow AI can help you become more efficient in all aspects of your patient group’s activities \n\n\nThe potential risks and dangers of using AI \n\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Have a think: what are you hoping to achieve with AI from attending this webinar? Come along and share your goals!\n \n \n \n \n \n About our webinars\nAll Beacon’s webinars are delivered online in Zoom’s webinar format. These are designed as a general overview of a topic to ensure all attendees have a good level of knowledge. There is always a chance to ask questions at the end\, and are often part of a series to cover different topics within one area. \nThis masterclass will equip patient group leaders with the essential AI skills they need to build capacity. It will be held online on Zoom. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the trainer\n \n \n \n \n \n Jenn Hood\nThird Sector Lab \nJenn Hood is an award-winning digital designer with a passion for supporting third sector organisations with digital upskilling and making the most of the technologies available to them. \nWith a decade of experience in digital communications\, she has collaborated with a variety of different organisations\, supporting them to streamline digital processes and increase their online visibility. \nAs the lead on website design and development at Third Sector Lab\, Jenn is continually studying and implementing technology trends\, resulting in user-friendly and impactful websites. Her expertise lies in transforming complex information into accessible digital content. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Register\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load.  URL:https://www.rarebeacon.org/event/webinar-using-ai-to-improve-capacity/ LOCATION:Online via Zoom CATEGORIES:Online,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/01/AI-webinar.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20231206T100000 DTEND;TZID=Europe/London:20231206T130000 DTSTAMP:20231130T083912Z CREATED:20231026T151108Z LAST-MODIFIED:20231130T083912Z UID:10000029-1701856800-1701867600@www.rarebeacon.org SUMMARY:Boost your online presence: SEO masterclass for beginners DESCRIPTION: \nAre you struggling to find new members of your patient group?\n  \nOnline presence is becoming increasingly important to connect with and support your patient community. This is especially true for those who are newly diagnosed\, their clinician may never have heard of their disease or have little knowledge of it\, leaving patients feeling overwhelmed and alone. These patients are all likely to go straight to Google to search for further information. Advocacy groups provide the vital support\, community\, and accurate information that patients need at this time; however\, this relies on patients being able to find them online. This is where Search Engine Optimisation (SEO) comes in and is one of the key tools to boost your online presence to patients\, families\, and others who might be interested in the condition you represent.   \nHowever\, we understand that for some individuals\, especially those who are new to it\, getting to grips with SEO may not come naturally. The aim of this online\, one-off\, masterclass is to equip patient group representatives who want to improve their skills with basic but efficient ways to understand and implement SEO to reach new audiences and be more findable online. \n  \nWhat is SEO?\nSEO (Search Engine Optimisation) is the process of optimising your owned resources (e.g.\, your website) to rank in search engines and drive traffic\, engagement\, and conversions organically\, without the need to pay for advertising. \nSEO can be divided into these three areas: on-page SEO\, off-page SEO\, and technical SEO\, and there are over 200 factors (‘ranking factors’) that will help your website rank higher on search engines (such as Google) for relevant keywords and search terms. \n  \nWhy is SEO important?\nIn the hectic online world\, utilising SEO helps patient groups meet their aims by: \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Raising awareness of your patient group\n \n \n \n \n \n \n \n \n \n \n \n Being more findable online to patients\, healthcare professionals\, researchers and industry representatives\n \n \n \n \n \n \n \n \n \n \n \n Enabling you to reach those who really need you \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n What to expect from the masterclass?\n  \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n This masterclass will teach you:\n\nThe core skills of SEO \nWhat SEO is in simple and practical terms \nThe latest developments in SEO\nHow to employ quick wins and long-term activities to increase the visibility of your patient group and drive more traffic to your website \n\nHave a think: what are you hoping to achieve with SEO from attending this masterclass? Come along and share your goals! \n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n About our masterclasses\nAll of Beacon’s masterclasses are delivered in a small group setting to ensure all attendees have the opportunity to receive direct support and feedback from the trainer. They are intended to be hands-on training where participants leave with something tangible they can put into practice for their organisation. \nThis masterclass will equip patient group leaders with the essential SEO skills they need to drive positive change. It will be held online on Zoom.  \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Meet the trainer\n \n \n \n \n \n Sukhjinder Singh\nSEO Consultant\, Sookio \nSukh is an SEO consultant with over 14 years’ experience driving organic awareness\, traffic\, and conversions for both big and small brands. He has also spent the same amount of time delivering training\, whether it’s to groups of people in SEO bootcamps or on a one-to-one basis. He enjoys educating and empowering clients\, strongly believing in cross-skilling to help them better comprehend the work being done and collaborate comfortably when needed. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Spaces are limited so claim yours now to avoid missing out!\n \n Register\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Please note: the ticket window may take a few seconds to load.  URL:https://www.rarebeacon.org/event/search-engine-optimisation-seo-masterclass/ LOCATION:Online via Zoom CATEGORIES:Masterclass,Online ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2023/12/Featured-photo-for-web-e1698760772225.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT END:VCALENDAR