BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Beacon for rare diseases - ECPv6.17.3.1//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: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:VTIMEZONE TZID:UTC BEGIN:STANDARD TZOFFSETFROM:+0000 TZOFFSETTO:+0000 TZNAME:UTC DTSTART:20220101T000000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20260326T100000 DTEND;TZID=Europe/Paris:20260326T160000 DTSTAMP:20260223T113935Z CREATED:20260210T153022Z LAST-MODIFIED:20260223T113935Z UID:10000219-1774519200-1774540800@www.rarebeacon.org SUMMARY:Inspire action through storytelling DESCRIPTION:A powerful story can open doors…\nto funding\, partnerships and influence!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n We’re delighted to invite rare disease patient group leaders to join us in London for a masterclass on storytelling. \nYou will learn how to create clear\, impactful narratives that support your goals and resonate with decision-makers. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \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 are built on powerful stories\, but knowing how to tell them well is what makes them effective.\n \n \n \n \n \n \n \n \n \n \n \n \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 masterclass\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Every person touched by a rare disease has a story\, whether that is of living with a condition\, caring for someone\, or navigating the healthcare system. These stories sit at the heart of rare disease patient groups and form the foundation of everything they do.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Knowing how to tell your story well can make a huge difference.\nIt could:\n\nBe the difference between a grant application that blends in and one that stands out\nAttract partners\, policymakers\, or researchers to your mission\nUnderpin a successful social media campaign or awareness day\nForm a core part of your impact report\n\n \n \n \n \n \n This masterclass will cover:\n\nThe theory of storytelling\, why it’s so powerful and how it can influence decisions\nHow to tailor your narrative for different audiences and goals\nHow to put yourself in the shoes of the people whose minds you want to change\, and influence them!\n\nYou’ll come away from the day with your own story-based action plan which you can use straight away!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Get your ticket 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 Dave has been a professional writer for almost 15 years and spent nearly a decade in the healthcare industry. \nDave is a qualified marketeer and agency leader\, with a deep interest in stories. He’s completed hundreds of medical communications projects and training courses\, across many therapy areas\, with a focus on rare disease. \nHe’s also written and self-published two books in his own Rare Disease Club series. He’s passionate about helping others build storytelling skills and influence meaningful change.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Dave Taylor-Langdale\nManaging Director\nWord Monster Agency\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Frequently asked questions\n \n \n \n \n \n Can I bring a carer with me?\n Yes\, any registered delegate is able to bring a carer with them to our training. If you’d like a carer to attend with you\, please choose the free carer ticket in addition to your own during registration.\n \n \n \n \n \n Do you cover travel expenses?\n Beacon will reimburse travel expenses for rare disease patients\, carers\, patient groups and charities\, up to the total value of £100 per person. If your travel is likely to exceed this amount\, please contact projects@rarebeacon.org ahead of the event so we can discuss whether further reimbursement will be possible. \nAll expenses\, other than mileage\, must be accompanied by valid receipts.   \nFor further information on our expenses policy\, please click here.  \n \n \n \n \n \n Where is the workshop? \n 20 Cavendish Square\, London W1G 0RN \nClosest underground stations: \n\nOxford Circus Station – 3 minute walk (Central Line\, Bakerloo Line\, Victoria Line)\nBond Street Station – 3 minute walk (Elizabeth Line\, Jubilee Line\, Central Line)\nGreat Portland Street Station – 13 minute walk (Circle Line\, Hammersmith & City Line\, Metropolitan Line)\n\n \n \n \n \n \n Is the venue accessible?\n The venue has step-free access via a lift and/or ramp and accessible toilets onsite. \nIf you have any accessibility requirements\, please note these on your registration form so we can ensure that your needs are met. \nTo discuss any additional accessibility measures we can provide\, please get in touch with our team at projects@rarebeacon.org. \n \n \n \n \n \n Will lunch be provided?\n Lunch and refreshments will be provided throughout the day. \nIf you have dietary requirements\, please let us know in the registration form. \n \n \n \n \n \n Do I have to pay a deposit?\n Yes. Registering for this in-person masterclass will require paying a refundable deposit of £30 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 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 7 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 \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/storytelling/ LOCATION:20 Cavendish Square\, London CATEGORIES:In-person,Masterclass ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2026/02/Storytelling-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: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:20250625T100000 DTEND;TZID=Europe/Paris:20250625T163000 DTSTAMP:20250617T125500Z CREATED:20250410T094254Z LAST-MODIFIED:20250617T125500Z UID:10000204-1750845600-1750869000@www.rarebeacon.org SUMMARY:Networking with confidence masterclass DESCRIPTION:Join us in London to master your networking skills\, connect meaningfully and unlock new collaboration opportunities!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Networking is vital for rare disease patient groups. It’s the first step to: \n\nBreak isolation\nBuild collective power\nOpen access to research\, expertise\, funding and opportunities that are often out of reach when working alone\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n In the rare disease space\, where resources are limited and patient populations are disperse and small\, collaboration is not a just a nice thing to have\, but the difference that will help you achieve your goals and drive change for 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 \n \n \n \n \n \n \n \n \n \n \n \n However\, networking can feel incredibly daunting\, especially when stepping into rooms full of unfamiliar faces. \nThe challenge is even greater for rare disease patient groups specifically\, as introducing a rare condition to stakeholders who may be hearing about it for the first time is not an easy task.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n If you’re looking to overcome these challenges\, join this masterclass!\n \n \n \n \n \n Want to see a real-life example of what can be achieved through the power of networking? Discover how a chance meeting led to the creation of a global registry for the AKU Society below. \n \n Read it 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 What to expect from the masterclass?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n We’ll provide practical strategies and exercises to help you recognise your own value\, prepare effectively for in-person and online events\, craft a compelling elevator pitch and develop your personal brand.\n \n \n \n \n \n After the masterclass\, you will be better equipped to identify potential collaborators\, make a memorable impression and build authentic relationships that can open new doors for your organisation.\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n You will learn:\n \n \n \n \n \n How to build confidence and recognise your own value\n We will cover: \n\nHow to recognise your own value\nHow to overcome imposter syndrome\nHow to have the right networking and collaborative mindset\n\n \n \n \n \n \n How to communicate clearly and engagingly\n We will cover: \n\nHow to craft a compelling elevator pitch \nHow to tailor your approach to different stakeholders to connect effectively\nHow to develop your personal and organisation’s brand\n\n \n \n \n \n \n How to prepare for networking in your event\n We will cover: \n\nThe importance of setting clear objectives before the event: who\, why and how\nHow to use event tools and materials to identify potential collaborators and facilitate conversation\n\n \n \n \n \n \n How to build connections through time\n We will cover: \n\nHow to build authentic\, meaningful relationships with different stakeholders\nBest practices to follow up effectively after the event and keep relationships long term\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \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 to claim your space!\n \n \n \n \n \n Don’t miss this opportunity to level up your networking skills and to interact with fellow patient group leaders!\n Tickets are limited\, so claim yours now! \n \n Register for your place 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 Please note: the ticket window may take a few seconds to load. Eventbrite allows you to secure your ticket without completing the full registration form. Please ensure that you complete all required questions in the form\, as this information is essential for the successful delivery of the 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     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 Andy Milligan \nCo-Founder of The Caffeine Partnership and Beacon trustee\n \n \n \n \n \n \n \n \n \n \n \n Andy Milligan is a leading international brand and business consultant and a co-founder of The Caffeine Partnership\, a company that provides ideas and advice to senior managers on business growth and branding. \nAndy has over 25 years of experience in branding and communications – building connections and working in industries as diverse as airlines\, finance\, telecommunications\, sports and pharmaceuticals. He is also a Beacon trustee and understands the rare disease patient group landscape.\n \n \n \n \n \n \n \n \n \n \n \n \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 scheme\n \n \n \n \n \n Registering for this in-person masterclass will require paying a refundable deposit of £30 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 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 7 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 Frequently asked questions\n \n \n \n \n \n Can I bring a carer with me?\n Yes! We offer free carer tickets for carers accompanying registered delegates. If you’d like a carer to attend with you\, please get a carer ticket in addition to your own ticket. Carer tickets are only available for already registered delegates.\n \n \n \n \n \n Do you cover travel expenses?\n Beacon will reimburse travel expenses for rare disease patients\, carers\, patient groups and charities\, up to the total value of £100 per person. If your travel is likely to exceed this amount\, please contact projects@rarebeacon.org ahead of the event so we can discuss whether further reimbursement will be possible. \nAll expenses\, other than mileage\, must be accompanied by valid receipts.   \nFor further information on our expenses policy\, please click here.  \n \n \n \n \n \n Where is the masterclass?\n The masterclass will be at the Royal Institution in London. The address is 21 Albemarle St\, London W1S 4BS\, UK. \nThe closest underground stations are: \n\nGreen Park Station – 5 mins walk (Jubilee\, Victoria and Piccadilly lines)\nPiccadilly Circus Station – 10 mins walk (Piccadilly and Bakerloo lines)\nOxford Circus Station – 10 mins walk (Victoria\, Central and Bakerloo lines)\n\n \n \n \n \n \n Is the venue accessible?\n The Royal Institution has two main entrances\, both accessible via double doors. All areas are wheelchair accessible via a lift with accessible toilets onsite\, near the reception area. You can find out more information about the venue here. \nIf you have any accessibility requirements\, please note these on your registration form so we can ensure that your needs are met. \nTo discuss any additional accessibility measures we can provide\, please get in touch with our team at projects@rarebeacon.org.\n \n \n \n \n \n Will lunch be provided?\n Lunch and refreshments will be provided throughout the day. \nIf you have dietary requirements\, please let us know in the registration form. URL:https://www.rarebeacon.org/event/networking-with-confidence-masterclass/ LOCATION:The Royal Institution\, 21 Albemarle Street\, W1S 4BS\, London\, United Kingdom CATEGORIES:In-person,Masterclass ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2025/04/Networking-FB.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:20250320T100000 DTEND;TZID=Europe/Paris:20250320T160000 DTSTAMP:20250127T093022Z CREATED:20250106T164458Z LAST-MODIFIED:20250127T093022Z UID:10000188-1742464800-1742486400@www.rarebeacon.org SUMMARY:Conquer public speaking: Unlock confidence\, forge connections\, and make an impact DESCRIPTION:Join us in London to develop your public speaking skills\, unlocking your confidence to share your message with clarity\, conviction and 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 For rare disease patient group leaders\, the ability to communicate effectively is essential—whether it’s speaking at events and conferences or networking with key stakeholders. Public speaking offers a unique opportunity to raise awareness about rare conditions\, share impactful stories\, and inspire action. \nYet\, we recognise the barriers leaders often face\, such as managing nerves\, a lack of confidence or experience\, and tackling the challenge of explaining complex scientific and medical topics—particularly for those without a scientific background. \n \n \n \n \n \n If you’re looking to overcome these challenges\, join 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 \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 We’ll provide practical strategies to boost your confidence and provide you with the opportunity to test your public speaking skills in a supportive environment.  \n \n \n \n \n \n You’ll learn how to craft a compelling narrative\, captivate your audience\, and develop a networking strategy that connects you with the stakeholders who can help you achieve your advocacy 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 You will learn:\n \n \n \n \n \n How to create an impactful presentation\n We will cover: \n\nHow to structure a clear and engaging presentation that keeps your audience captivated throughout.\nTips and tricks to help you master stagecraft and storytelling.\nHow to present your personal or sensitive experiences while maintaining boundaries to help you deliver an empowering talk that you and your community are comfortable with. \n\n \n \n \n \n \n How to effectively engage with your audience \n We will cover \n\nThe importance of having a ‘big picture’ approach to maximise engagement at events.   \nHow to create a networking strategy to connect with key stakeholders before and after your talk.\n\n \n \n \n \n \n How to build confidence and manage your nerves \n We will cover: \n\nStrategies to manage nerves and boost confidence: Discover practical tools and expert advice to help you overcome stage fright\, remain calm under pressure\, and stay confident.\n\n \n \n \n \n \n Deliver a short\, compelling talk!\n Apply what you’ve learnt by preparing and presenting a short talk. This interactive exercise will give you real-time experience and feedback to refine your skills and build confidence in a supportive environment. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \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 to claim your space!\n \n \n \n \n \n You don’t want to miss this opportunity to improve your public speaking skills and to interact with fellow patient group leaders!\n Tickets are limited\, so claim yours now so you don’t miss out! \n \n Register for your place 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 Please note: the ticket window may take a few seconds to load. Eventbrite allows you to secure your ticket without completing the full registration form. Please ensure that you complete all required questions in the form\, as this information is essential for the successful delivery of the 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     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 Fiona Kearns\nBusiness Psychologist\, Kearns Consultancy\n \n \n \n \n \n \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 scheme\n \n \n \n \n \n Registering for this in-person masterclass will require paying a refundable deposit of £30 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 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 7 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 Frequently asked questions\n \n \n \n \n \n Do you cover travel expenses?\n Beacon will reimburse travel expenses for rare disease patients\, carers\, patient groups and charities\, up to the total value of £75.00 per person. If your travel is likely to exceed this amount\, please contact projects@rarebeacon.org ahead of the event so we can discuss whether further reimbursement will be possible. \nAll expenses\, other than mileage\, must be accompanied by valid receipts.   \nFor further information on our expenses policy\, please click here.  \n \n \n \n \n \n Where is the masterclass?\n The masterclass will be at the Royal Institution in London. The address is 21 Albemarle St\, London W1S 4BS\, UK. \nThe closest underground stations are: \n\nGreen Park Station – 5 mins walk (Jubilee\, Victoria and Piccadilly lines)\nPiccadilly Circus Station – 10 mins walk (Piccadilly and Bakerloo lines)\nOxford Circus Station – 10 mins walk (Victoria\, Central and Bakerloo lines)\n\n \n \n \n \n \n \n Is the venue accessible?\n The Royal Institution has two main entrances\, both accessible via double doors. All areas are wheelchair accessible via a lift with accessible toilets onsite\, near the reception area. You can find out more information about the venue here. \nIf you have any accessibility requirements\, please note these on your registration form so we can ensure that your needs are met. \nTo discuss any additional accessibility measures we can provide\, please get in touch with our team at projects@rarebeacon.org. \n \n \n \n \n \n Will lunch be provided?\n Lunch and refreshments will be provided throughout the day. \nIf you have dietary requirements\, please let us know in the registration form. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \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 Our public speaking training serves as an introductory course tailored specifically for individuals who want to grow their confidence and skills in public speaking. \nIf you’re a beginner who is eager to learn how to manage your nerves\, or you’re looking for advice on how to effectively convey your message and engage your audience\, this in-person masterclass is perfect for you. URL:https://www.rarebeacon.org/event/presenting-and-public-speaking/ LOCATION:The Royal Institution\, 21 Albemarle Street\, W1S 4BS\, London\, United Kingdom CATEGORIES:In-person,Masterclass ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2025/01/Social-media-FB-2-2.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: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:20240620T100000 DTEND;TZID=Europe/Paris:20240620T160000 DTSTAMP:20250106T160901Z CREATED:20240219T094702Z LAST-MODIFIED:20250106T160901Z UID:10000097-1718877600-1718899200@www.rarebeacon.org SUMMARY:Harnessing the power of social media DESCRIPTION:Join us in London to learn how to harness the power of social media to help your patient group achieve its advocacy goals!\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Social media is a powerful and accessible tool for patient group leaders to tap into. \nIt provides ample opportunities to assist groups in achieving their advocacy goals. It serves as a platform for fundraising\, sharing knowledge and experiences\, raising awareness about rare conditions\, connecting with patients and families worldwide\, and discovering new patients. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Navigating this digital landscape\, however\, comes with its challenges. With the ever-changing nature of social media\, it’s often difficult to determine where to direct your efforts so you can have the most significant impact. \nJoin us for this in-person masterclass where we’ll explore strategies to effectively utilise social media for rare disease advocacy. Together\, we’ll empower you to navigate these platforms with confidence\, ensuring that your efforts yield meaningful results. \n \n \n \n \n \n \n \n \n \n \n \n \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 Our social media training is designed as an introductory course tailored specifically for individuals who do not come from a communications or social media background. \nIf you’re a beginner who is eager to learn the ropes or you’re looking for tips on how to maximise your social media impact\, this in-person masterclass is perfect for 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 What to expect from the masterclass?\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n This in-person masterclass will be an interactive session with plenty of opportunities to interact with the trainer and your fellow rare leaders. \n \n \n \n \n \n \n \n \n \n \n \n We will cover:\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Refining your messaging and choosing your platforms\n\nThe importance of setting goals for your social media and how to do this\nAn overview of the major social media platforms and who uses them\nThe types of content that work best on each platform\nHow to tailor your messaging to fit the platform\n\n \n \n \n \n \n Creating engaging content\n\nTips on how to create engaging content\nExamples of people who are using social media well and what we can learn from them\nUsing canva to create content – with live demonstrations and activities!\n\n \n \n \n \n \n How to get the most out of social media\n\nDemonstrations of different time-saving tools and how to use them\nHow to use analytics to measure your social media impact\nTips on how to boost engagement\n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \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 Sue Keogh\, Director\nRead Sue’s bio \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Olha Havrina\, Digital Marketing Executive\nRead Olha’s bio \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n This in-person masterclass will be led by social media experts Sookio. \nSookio are a strategic digital marketing agency that helps ambitious and transformative organisations communicate their ideas to the world through brilliant digital strategy\, content and campaigns. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n You don’t want to miss this opportunity to improve your social media skills and to interact with fellow patient group leaders!\n Tickets are limited\, so claim yours now so you don’t miss out! \n \n Register for your place 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 Deposit scheme\n \n \n \n \n \n Registering for this in-person masterclass will require paying a refundable deposit of £30 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 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 7 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 \n \n Frequently asked questions\n \n \n \n \n \n Do you cover travel expenses?\n Beacon will reimburse travel expenses for rare disease patients\, carers\, patient groups and charities\, up to the total value of £75.00 per person. If your travel is likely to exceed this amount\, please contact projects@rarebeacon.org ahead of the event so we can discuss whether further reimbursement will be possible. \nAll expenses\, other than mileage\, must be accompanied by valid receipts.   \nFor further information on our expenses policy\, please click here.  \n \n \n \n \n \n Where is the masterclass?\n 20 Cavendish Square\, London W1G 0RN \nClosest underground stations: \n\nOxford Circus Station – 3 mins walk (Central Line\, Bakerloo Line\, Victoria Line)\nBond Street Station – 3 mins walk (Elizabeth Line\, Jubilee Line\, Central Line)\nGreat Portland Street Station – 13 mins (Circle Line\, Hammersmith & City Line\, Metropolitan Line)\n\n \n \n \n \n \n Is the venue accessible?\n The venue has step-free access via a lift and/or ramp and accessible toilets onsite. \nIf you have any accessibility requirements\, please note these on your registration form so we can ensure that your needs are met. \nTo discuss any additional accessibility measures we can provide\, please get in touch with our team at projects@rarebeacon.org. \n \n \n \n \n \n Will lunch be provided?\n Lunch and refreshments will be provided throughout the day. \nIf you have dietary requirements\, please let us know in the registration form. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \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 ticket window may take a moment to load URL:https://www.rarebeacon.org/event/introduction-to-social-media/ LOCATION:20 Cavendish Square\, London CATEGORIES:In-person,Masterclass ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2024/02/Social-media-FB.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 BEGIN:VEVENT DTSTART;TZID=UTC:20231109T100000 DTEND;TZID=UTC:20231109T160000 DTSTAMP:20231011T091705Z CREATED:20230719T141922Z LAST-MODIFIED:20231011T091705Z UID:10000024-1699524000-1699545600@www.rarebeacon.org SUMMARY:Crafting compelling communications DESCRIPTION:Are you part of a rare disease patient organisation seeking to make a significant impact?\n  \nEffective communication of your organisation’s mission and vision is essential for a patient group’s success as it engages people and makes them care about the disorder you represent. \nHowever\, due to the complexity of rare diseases and the personal connection that usually goes hand in hand with those working in this space\, communicating in a memorable and effective way has its challenges. \n  \nWhy Good Messaging Matters\n  \nIn the world of rare diseases\, where every voice and story matters\, having well-crafted messaging 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 awarness of your condition \n \n \n \n \n \n \n \n \n \n \n \n Engaging and inspiring stakeholders and collaborators\n \n \n \n \n \n \n \n \n \n \n \n Garnering support and funding\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \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 help you develop and refine your messaging so you can communicate with impact. Our expert trainer will help you identify what part of your story evokes an emotional response in others and how to tailor your message to different audiences. \n  \nWe will cover:\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \nDeveloping clear messaging strategies: discover techniques to refine your organization’s core messages\, making them easy to understand and emotionally resonant.\n\n \n \n \n \n \n \nCrafting the perfect elevator pitch: Learn how to create a succinct and powerful elevator pitch that clearly conveys your organisation’s mission\, objectives\, and impact within a short timeframe.\n\n \n \n \n \n \n \nTailoring messages for different audiences: Understand how to adapt your messaging for various audiences\, such as patients\, healthcare professionals\, donors\, and the general public\, ensuring your message remains effective in diverse contexts.\n\n \n \n \n \n \n \nEffective networking techniques: Learn how to network with confidence\, using the messaging you have developed earlier in the session to build meaningful connections with potential collaborators\, sponsors\, and partners.\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 communication skills they need to drive positive change. It’s in-person and lunch and refreshments will be provided. \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n Frequently asked questions\n \n \n \n \n \n Do you cover expenses? \n Beacon will reimburse travel expenses for rare disease patients\, carers\, patient groups and charities\, up to the total value of £75.00 per person. If your travel is likely to exceed this amount\, please contact projects@rarebeacon.org ahead of the event so we can discuss whether further reimbursement will be possible. \nAll expenses\, other than mileage\, must be accompanied by valid receipts.   \nFor further information on our expenses policy\, please click here.  \n \n \n \n \n \n Where is the workshop?\n The workshop is taking place at The Royal Institution of Great Britain\, 21 Albemarle Street\, London\, W1S 4BS. \nNearest tube stations: \n\nGreen Park (step-free access)\nPiccadilly Circus\nOxford Circus\n\n \n \n \n \n \n Is the venue accessible?\n The venue has step-free access via a lift and/or ramp and accessible toilets onsite. \nIf you have any accessibility requirements\, please note these on your registration form so we can ensure your needs are met. \nTo discuss any additional accessibility measures we can provide\, please get in touch with our team at projects@rarebeacon.org. \n \n \n \n \n \n Will lunch be provided?\n Lunch and refreshments will be provided throughout the day. \nIf you have dietary requirements please let us know in the registration form. \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 Andy Milligan\nCo-Founder\, The Caffeine Partnership \nAndy has 25+ years of experience in branding and communications! \nHe is also a Beacon trustee and understands the rare disease patient group landscape. \n \n \n \n \n \n \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 your spot now so you don’t miss 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 \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-compelling-communications/2023-11-09/ LOCATION:Royal Institute\, 21 Albemarle Street\, London\, W1S 4BS\, United Kingdom CATEGORIES:In-person,Masterclass ATTACH;FMTTYPE=image/jpeg:https://www.rarebeacon.org/wp-content/uploads/2023/07/beacon-impact-workshop-372-e1690387339763.jpg ORGANIZER;CN="Beacon for Rare Diseases":MAILTO:projects@rarebeacon.org END:VEVENT END:VCALENDAR