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X-WR-CALNAME:Medics For Rare Disease
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X-WR-CALDESC:Events for Medics For Rare Disease
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240126T140000
DTEND;TZID=Europe/London:20240126T153000
DTSTAMP:20260403T225513
CREATED:20231215T103824Z
LAST-MODIFIED:20231215T103824Z
UID:11389-1706277600-1706283000@www.m4rd.org
SUMMARY:Building NHS healthcare professional awareness resources
DESCRIPTION:Come along to learn more about how your voice can help healthcare professionals learn about rare disease. You will be joined by Kate Tatton-Brown and Alison Pope\, Clinical Directors at NHS England\, as they present the Genomics Education Programme and why it’s important. \nPlease find the link to the zoom webinar here: https://us06web.zoom.us/j/84487083787 \nWe would greatly value your participation and would very much appreciate if you could let us know by Friday 5th January if you accept this invitation. \nIf you have any questions\, please do not hesitate to contact Nadine at nadine@m4rd.org
URL:https://www.m4rd.org/event/building-nhs-healthcare-professional-awareness-resources/
LOCATION:ONLINE
CATEGORIES:M4RD,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/12/39295BA8-B343-4A44-98EA-B95FFEEED661.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240313T190000
DTEND;TZID=Europe/London:20240313T203000
DTSTAMP:20260403T225513
CREATED:20240215T103859Z
LAST-MODIFIED:20240215T103859Z
UID:11490-1710356400-1710361800@www.m4rd.org
SUMMARY:Beyond the Student Voice Prize
DESCRIPTION:Join us to celebrate the end of another highly successful Student Voice Prize. \nThis year’s competition saw more entries than ever before from 30 different universities across 18 countries. We are so grateful to the students and patient groups who contributed to this success. \nThis event is an opportunity for us to share these achievements and showcase some inspiring case studies. We will also highlight opportunities for students to continue their involvement in rare diseases going forward. \nWe hope that for many students this competition has marked the beginning of a continued interest in rare diseases that could span their career and make a real difference to the lives of people living with rare conditions. \n\n\nWho is this event for?\n\n\n\n\n\nMedical and science students who have entered The Student Voice Prize in the past or would be interested to in the future\nMedical and science students interested in learning more about rare conditions and getting involved in the community\nRare disease patient group leaders interested in SVP\, even if you haven’t been involved in the past\n\n\n\n\nDuring this event you will:\n\n\n\n\n\nHear stories from rare disease patients and advocates\nConnect with students and the rare disease community\nHear from 2023 competition winners\nLearn about opportunities to get involved with rare diseases going forward\n\nSpaces are limited\, don’t wait to claim your free ticket!
URL:https://www.m4rd.org/event/beyond-the-student-voice-prize/
LOCATION:ONLINE
CATEGORIES:Conference,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2024/02/Beyond-SVP-graphic-1.jpg
ORGANIZER;CN="Rare Beacon":MAILTO:eleanor@m4rd.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240925T193000
DTEND;TZID=Europe/London:20240925T210000
DTSTAMP:20260403T225513
CREATED:20240918T142346Z
LAST-MODIFIED:20240918T142346Z
UID:12280-1727292600-1727298000@www.m4rd.org
SUMMARY:Misdiagnosis and surgical uncertainty - A patient's perspective
DESCRIPTION:Charlotte Cuffe is a CAUK member and her patient story was recently featured in a prestigious global essay competition after she was interviewed by 5th Year Medical Student\, Iman Muzafar. Join us to hear Charlotte and Iman in conversation about misdiagnosis and surgical uncertainty. To read Iman’s award-winning essay published in Springer Nature go to https://communities.springernature.com/posts/student-voice-prize-runner-up \nThis is the registration link for the event: https://us06web.zoom.us/webinar/register/WN_GNz8TK1lQN-wUqrXDtaXKQ#/registration
URL:https://www.m4rd.org/event/misdiagnosis-and-surgical-uncertainty-a-patients-perspective/
CATEGORIES:Conference,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2024/09/931F0965-B30B-406B-B97C-15748E6C9570.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250225T190000
DTEND;TZID=Europe/London:20250225T210000
DTSTAMP:20260403T225513
CREATED:20250121T164111Z
LAST-MODIFIED:20250123T111643Z
UID:12739-1740510000-1740517200@www.m4rd.org
SUMMARY:Rare Disease 101 for Rare Disease Day 2025!
DESCRIPTION:Medics for Rare Disease: Rare Disease 101 for Rare Disease Day 2025! \nJoin us this Rare Disease Day for an engaging and impactful Rare Disease 101 online training session\, reimagined with updated content and a fresh new look ✨. \nRare disease affects 350 million people worldwide\, yet remains underrepresented in medical education. This session is designed to bridge that gap by approaching rare disease as a single discipline\, highlighting the common challenges experienced by impacted people and discussing how to make a difference 💡. \nWhy attend? \n🧠 Gain insights into the fundamentals of rare disease and learn how every healthcare professional can make a difference.\n💬 Hear from the winner of the Student Voice Prize 2024 – more details to be revealed!\n👂 Listen to powerful reflections from a lived-experience advocate\, offering invaluable understanding of what it’s like to navigate the healthcare system with a rare condition. \nThis session is perfect for doctors\, nurses\, and other healthcare professionals\, but it’s open to everyone worldwide\, so don’t miss the opportunity to expand your knowledge and be part of the global conversation on rare disease. 🌍 \n➡️ Secure your spot today! The first 25 sign-ups will receive a NEW rebranded Medics for Rare Disease pin badge – perfect for showing others that you’re Rare Aware! \nMedics for Rare Disease understands that some people may experience barriers to paid attendance. We have therefore reserved a number of FREE general admission tickets. Email helen@m4rd.org to receive the relevant promo code. \nFind out more about Medics for Rare Disease at m4rd.org and take our free e-learning modules at learn.m4rd.org! 🎓
URL:https://www.m4rd.org/event/rare-disease-101-for-rare-disease-day-2025/
LOCATION:ONLINE
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/01/25th-Feb-2025-7pm.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250612T120000
DTEND;TZID=Europe/London:20250612T140000
DTSTAMP:20260403T225513
CREATED:20250604T153842Z
LAST-MODIFIED:20250604T153842Z
UID:13534-1749729600-1749736800@www.m4rd.org
SUMMARY:Genomics in Primary Care: What GPs need to know
DESCRIPTION:Genomic medicine has a significant impact within the field of primary care. Generally acting as the gateway to the NHS and specialised services\, primary care practitioners are crucial in the early identification of genetic conditions and in ensuring appropriate management of a range of conditions. \nGenomics features in everyday primary care practice in a range of ways: \n* Rare diseases are individually rare but collectively affect 1:17 families. GPs may have a caseload with a number of patients with the same rare disease within a family.\n* Most care for patients with genetic conditions is provided in the community. A patient’s genetic condition might influence your choice of commonly prescribed medications such as HRT or contraceptives.\n* Some common conditions have genetic susceptibility. Clinical Genetics only see the patients that GPs refer to them. As a GP you are in a unique position to suspect these diagnoses early and refer appropriately.\n* Patients with inherited cancer predisposition syndromes need regular screening to find cancer early and improve prognosis. You can encourage them to attend for this.\n* GPs can give preconception advice for families with known genetic conditions and encourage relatives to be tested to benefit from additional screening/treatment.\n* Genes influence the way that our bodies process medication. As more research emerges\, genetics is likely to influence our approach to prescribing in the future. This is already being seen in the prescription of clopidogrel to patients who have had a stroke. \nIn this informative webinar\, we’ll hear from a range of experts – from patients through to healthcare professionals – to examine the application of genomics within primary care and how it relates to your role.  \nRegister now to secure your place here\, and don’t hesitate to get in touch if you have any questions.
URL:https://www.m4rd.org/event/genomics-in-primary-care-what-gps-need-to-know/
LOCATION:ONLINE
CATEGORIES:clinical,Conference,Genomics,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/06/Screenshot-2025-06-04-at-16.38.02.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250715T120000
DTEND;TZID=Europe/London:20250715T140000
DTSTAMP:20260403T225513
CREATED:20250714T142551Z
LAST-MODIFIED:20250714T142551Z
UID:13601-1752580800-1752588000@www.m4rd.org
SUMMARY:Our Voices\, Our Stories: Lived Experiences of Genomic Testing
DESCRIPTION:Genomic testing is a complex clinical topic\, with new developments and discoveries taking place at a rapid rate. Often\, we focus predominantly on the clinical and scientific aspects of genomics\, but it’s crucial to remember that each advancement has life-changing impacts on people across the world. \nIn this webinar\, we’ll be exploring the lived experiences of people who have gone through genomic testing\, research and diagnosis. Each of the participants you will hear from has a unique and impactful story\, and will provide powerful insights into the human side of the genomic testing process. With experiences across cancer and rare disease\, from parent carers through to those diagnosed as adults\, we’ll be shining a light on the emotions involved in testing\, diagnosis and treatment. Not only will you get to hear these compelling stories – you’ll also have the opportunity to ask questions and learn more about the importance of patient and public involvement in genomic testing and research. \nThe webinar will be co-chaired by two clinical experts in genomics – Dr Hannah Titheradge\, Consultant Clinical Geneticist at Birmingham Women’s and Children’s Hospital (BWC)\, and Emma Douglas\, Genetics Clinical Research Practitioner at BWC. Hannah has years of experience working in clinical genetics and is the Rare Disease Lead at BWC\, whilst Emma is an expert in genetic research and is currently working towards her PhD on the patient experience of genomic testing. \nThis session is open to everyone\, whether you’re a patient\, healthcare professional\, or an interested member of the public. If you’ve got lived experience yourself or any questions\, you are welcome to share during the Q&A. For healthcare professionals\, the session promises to provide you with a better understanding of the crucial patient perspective to better support those in your clinic. \nIf you have any queries about the event\, please get in touch. If you’ve got any accessibility requirements\, please let us know during the registration process. \nAnd if you’re interested but aren’t able to attend on the date itself\, make sure to still register and we will send you the recording after the event has taken place! \nYou can sign up here
URL:https://www.m4rd.org/event/our-voices-our-stories-lived-experiences-of-genomic-testing/
LOCATION:ONLINE
CATEGORIES:Conference,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/07/Screenshot-2025-07-14-at-15.25.15.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250716T150000
DTEND;TZID=Europe/London:20250716T160000
DTSTAMP:20260403T225513
CREATED:20250714T141039Z
LAST-MODIFIED:20250714T141145Z
UID:13596-1752678000-1752681600@www.m4rd.org
SUMMARY:Introduction to Delphi Studies
DESCRIPTION:Have you ever heard of a Delphi Study and not quite sure what it entails? Or maybe you have never heard of Delphi? This webinar will be providing training on what a Delphi Study is and how they are run. PhD Candidate\, Shams Al-Ani\, studying Pharmaceutical medicine and regulatory affairs at Centre for Pharmaceutical Medicine Research\, King’s College London will be delivering the training through a 45 minute presentation with time for Q+A session afterwards. \nSign up here
URL:https://www.m4rd.org/event/introduction-to-delphi-studies/
LOCATION:ONLINE
CATEGORIES:Conference,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/07/Screenshot-2025-07-14-at-15.09.04.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250930T143000
DTEND;TZID=Europe/London:20250930T150000
DTSTAMP:20260403T225513
CREATED:20251008T143325Z
LAST-MODIFIED:20251008T143421Z
UID:13731-1759242600-1759244400@www.m4rd.org
SUMMARY:Ambassador Welcome Brew
DESCRIPTION:A short\, casual catch-up for Medics for Rare Disease Ambassadors (cohort 2024/25) starting their second year on the Programme. \nThese informal sessions allow the Ambassadors to ask questions of the team and each other and to share experiences and challenges to inspire each other!
URL:https://www.m4rd.org/event/ambassador-welcome-brew-2/
LOCATION:ONLINE
CATEGORIES:Ambassadors,M4RD,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2025/10/https___cdn.evbuc_.com_images_1114015993_530843553353_1_original.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251008T193000
DTEND;TZID=Europe/London:20251008T200000
DTSTAMP:20260403T225513
CREATED:20251008T143248Z
LAST-MODIFIED:20251008T143248Z
UID:13728-1759951800-1759953600@www.m4rd.org
SUMMARY:Ambassador Welcome Brew
DESCRIPTION:A short\, casual catch-up for Medics for Rare Disease Ambassadors (cohort 2024/25) starting their second year on the Programme. \nThese informal sessions allow the Ambassadors to ask questions of the team and each other and to share experiences and challenges to inspire each other!
URL:https://www.m4rd.org/event/ambassador-welcome-brew/
LOCATION:ONLINE
CATEGORIES:Ambassadors,M4RD,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2025/10/https___cdn.evbuc_.com_images_1114015993_530843553353_1_original.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251027T150000
DTEND;TZID=Europe/London:20251027T160000
DTSTAMP:20260403T225513
CREATED:20251008T142605Z
LAST-MODIFIED:20251008T142605Z
UID:13725-1761577200-1761580800@www.m4rd.org
SUMMARY:Rare Disease Day 2026: Launch Webinar
DESCRIPTION:Join one of two upcoming webinars on either the 27 or 28  October for a first look at Rare Disease Day 2026! Learn more about the resources which have been created and everything that is available for download to use in your campaign. This webinar is for patient advocates\, patient organisations\, industry supporters and all stakeholders in the rare disease community.
URL:https://www.m4rd.org/event/rare-disease-day-2026-launch-webinar/
LOCATION:ONLINE
CATEGORIES:Patient advocacy,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/webp:https://www.m4rd.org/wp-content/uploads/2025/10/RDD-2026-Launch-Webinar.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251103T130000
DTEND;TZID=Europe/London:20251103T140000
DTSTAMP:20260403T225513
CREATED:20251017T132431Z
LAST-MODIFIED:20251023T213702Z
UID:13753-1762174800-1762178400@www.m4rd.org
SUMMARY:King's Health Partners Rare Disease Grand Round: Hepatobiliary disease
DESCRIPTION:Join the upcoming Rare Disease Grand Round\, hosted by the King’s Health Partners Rare Disease Network—bringing together researchers and clinicians across the region to foster collaboration\, share insights\, and advance rare disease research. \nThis session will focus on hepatobiliary disease\, featuring expert talks on cutting-edge research: \nMind over MASLD: Unravelling brain dysfunction in steatotic liver disease – Dr Anna Hadjihambi\, Group Lead\, UKRI Future Leaders Fellow\, King’s College London \nPresentation by Prof Philip Newsome\, Professor of Hepatology and Director of The Roger Williams Institute of Liver Studies – title to be announced \nThe event will be chaired by Dr Cristina Dias\, Chair of the KHP Rare Disease Network\, Clinical Reader in Genomics and Neurodevelopment at King’s College London\, and Consultant in Clinical Genetics and Genomics at Guy’s and St Thomas’ NHS Foundation Trust. \nWhy attend? Connect with the King’s Health Partners research and clinical community\, hear from leading experts\, and explore the latest developments in rare disease research. \nRecording available later on the KHP Learning Hub.
URL:https://www.m4rd.org/event/kings-health-partners-rare-disease-grand-round-hepatobiliary-disease/
LOCATION:ONLINE
CATEGORIES:Genomics,HCPs,Lectures,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/10/KHP.png
ORGANIZER;CN="King's Health Partners":MAILTO:jennifer.1.burt@kcl.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260115T133000
DTEND;TZID=Europe/London:20260115T150000
DTSTAMP:20260403T225513
CREATED:20260109T140652Z
LAST-MODIFIED:20260109T140740Z
UID:14360-1768483800-1768489200@www.m4rd.org
SUMMARY:Moving the WHA Resolution on Rare Diseases Forward: From Promise to Action
DESCRIPTION:Join Rare Diseases International for this public webinar where they will discuss the current status of the WHA Resolution implementation\, as they approach the World Health Organization Executive Board meeting taking place in February 2026. This webinar will engage in a multistakeholder dialogue focusing on the necessary path forward to accelerate the implementation of the Resolution and importantly the development of the GAPRD.
URL:https://www.m4rd.org/event/moving-the-wha-resolution-on-rare-diseases-forward-from-promise-to-action/
LOCATION:ONLINE
CATEGORIES:Global Health,Policy & Advocacy,Public Engagement,Rare Disease,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/01/RDI.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260211T193000
DTEND;TZID=Europe/London:20260211T203000
DTSTAMP:20260403T225513
CREATED:20260109T151523Z
LAST-MODIFIED:20260114T114418Z
UID:14372-1770838200-1770841800@www.m4rd.org
SUMMARY:Rarely Taught: Reflections on Rare Disease Training Globally
DESCRIPTION:Connect with healthcare professionals and students from around the world for a dynamic discussion on rare disease medical training across global contexts. \nAs part of this interactive session\, we’ll also deliver a FLASH Rare Disease 101 training showcasing our updated e-learning course – giving you the opportunity to #LearnYourStripes ahead of Rare Disease Day 2026. \n📅 Event Details\nDate & Time: 11 February 2026\, 19:30–20:30 GMT\nLocation: 💻 Online via Zoom\n👉 Register via Eventbrite and receive the Zoom link shortly before the event \n🌐 What to Expect\nA concise\, high-impact Rare Disease 101 teaching session\nA shared conversation on learning needs\, challenges and opportunities in rare disease medical training\nOpportunities to connect with peers worldwide \n🎟️ Who should attend?\nOpen to healthcare professionals and students globally. FREE to attend with optional £10 donation. \nWhether you’re looking to expand your knowledge\, gain a global perspective\, or connect with like-minded colleagues\, this event is the perfect way to kick-start your Rare Disease Day 2026 learning. \n📌 Save the date and register now!
URL:https://www.m4rd.org/event/save-the-date-global-rare-disease-101-online-event/
LOCATION:ONLINE
CATEGORIES:Conferences / Workshops,Global Health,HCPs,Lectures,Medical Students,Rare Disease,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/01/E885C233-D7D5-48E3-A930-B83A15A3A332.png
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