BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Beacon for rare diseases - ECPv6.17.5//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:VEVENT DTSTART;TZID=Europe/Paris:20260716T100000 DTEND;TZID=Europe/Paris:20260716T113000 DTSTAMP:20260708T155608Z CREATED:20260615T144253Z LAST-MODIFIED:20260708T155608Z UID:10000220-1784196000-1784201400@www.rarebeacon.org SUMMARY:Understanding the value of your repurposed medicine DESCRIPTION: URL:https://remedi4all.org/event/webinar-understanding-the-value-of-your-repurposed-medicine/ CATEGORIES:Online,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2026/06/Updated-HTA-webinar-graphic.jpg 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: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: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: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: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=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: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 END:VCALENDAR