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X-WR-CALDESC:Events for Medics For Rare Disease
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DTSTART;VALUE=DATE:20250228
DTEND;VALUE=DATE:20250301
DTSTAMP:20260423T124721
CREATED:20250122T102638Z
LAST-MODIFIED:20250122T102638Z
UID:12753-1740700800-1740787199@www.m4rd.org
SUMMARY:#ShowYourStripes for Rare Disease Day 2025
DESCRIPTION:Calling all healthcare professionals… dig out your stripey socks and get ready to ‘show your stripes’ as we approach Rare Disease Day on 28th February. Medics for Rare Disease is asking clinicians\, allied healthcare professionals and healthcare students to join forces\, to help drive rare disease awareness in the run up to the big day! \nStripey socks and selfies \nGetting involved is easy. Just wear some stripey socks and post a selfie on Instagram or LinkedIn with the hashtag #ShowYourStripes and tag @MedicsForRare. All tagged photos will be uploaded to an online gallery that will remain a visual show of support to those people living with rare conditions. Not on social media? No problem\, just email your pictures to hello@m4rd.org. \nShow off those stripes all week! \nFriday 28th is Rare Disease Day but we encourage you to show your stripes on whatever shifts you may be working that week\, from Monday 24th February! Team pictures and creative selfies are welcome and there will be awards for the most impressive images. For inspiration\, check out last year’s gallery here. \nAwareness is Key \nRare diseases are individually rare but collectively common\, affecting 3.5 million people in the UK. Patients with rare disease face similar challenges\, waiting an average of 5 years to reach diagnosis. Raising healthcare professional awareness about rare disease is key to a timely diagnosis and better outcomes.  \nWhy the stripes? \nThe zebra was adopted as a symbol of the rare disease community. This is thanks to the now archaic medical adage ‘when you hear hooves\, think horse not zebra’\, that still impacts clinical decision-making today. \nShow your support\, #ShowYourStripes!
URL:https://www.m4rd.org/event/showyourstripes-for-rare-disease-day-2025/
LOCATION:ONLINE
CATEGORIES:M4RD,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/01/Untitled-1920-x-1080-px-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250623T093000
DTEND;TZID=Europe/London:20250623T160000
DTSTAMP:20260423T124721
CREATED:20250529T090035Z
LAST-MODIFIED:20250602T105336Z
UID:13516-1750671000-1750694400@www.m4rd.org
SUMMARY:Recommendation Writing Workshop
DESCRIPTION:Monday 23rd June 9.30 – 4pm at Edgbaston Park Hotel. LIMITED PLACES – reserve your spot now!\nWelcome to the IAG2 Face to Face Meeting!\nMedics for Rare Disease has a vision of healthcare equity for everyone. We have been working with the Department of Health and Social Care since 2018 in order to achieve our mission. \nOn 23rd June we are hosting a workshop in order to develop recommendations for the DoHSC about ‘healthcare professional awareness of rare disease’. \nWe will be asking…\nWhat is healthcare professional awareness?\nHow do we implement it throughout the NHS?\nHow do we measure it? \nIf you have practical ideas and suggestions that could inform these recommendations\, WE WANT YOU to join us on the day. \nWho do we want to attend:\nPeople who have practical ideas\nPeople who have experience of driving system change\nPeople who have experience developing services in the NHS\nPeople with experience designing and implementing e.g. Dementia Friendly Hospitals\nHealthcare professionals\, people who work in the NHS and advocates alike!\nThis project (‘IAG2’) is being run by Medics for Rare Disease and Emotive with support from collaborators on the UK Rare Diseases Framework Forum and has been approved by The Department of Health and Social Care. \nKeep in mind:\nWe are not responsible for implementing the recommendations\nThis will not be a forum for exploring single individual’s experiences\nThis will not be a forum for raising concerns or complaints about single cases of care \nMedics for Rare Disease – www.m4rd.org\nEmotive – https://emotiveagency.com \nReserve your place here
URL:https://www.m4rd.org/event/recommendation-writing-workshop/
LOCATION:Edgbaston Park Hotel
CATEGORIES:Conference,Rare Diseases
ATTACH;FMTTYPE=image/avif:https://www.m4rd.org/wp-content/uploads/2025/05/workshop-1.avif
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251027T150000
DTEND;TZID=Europe/London:20251027T160000
DTSTAMP:20260423T124721
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
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251103T130000
DTEND;TZID=Europe/London:20251103T140000
DTSTAMP:20260423T124721
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:20251107T123000
DTEND;TZID=Europe/London:20251107T173000
DTSTAMP:20260423T124721
CREATED:20250912T145020Z
LAST-MODIFIED:20250912T145719Z
UID:13674-1762518600-1762536600@www.m4rd.org
SUMMARY:EDIRA 'Let’s COCO: Celebrating the Doers
DESCRIPTION:A Hybrid event celebrating DOERS who showcase their Collaboration – Outreach – Co-creation projects with impactful Outcomes. \nThis is your chance to be part of a dynamic\, hybrid gathering.
URL:https://www.m4rd.org/event/edira-lets-coco-celebrating-the-doers/
LOCATION:Edgbaston Park Hotel
CATEGORIES:Networking,Rare Diseases,Showcase
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2025/09/https___cdn.evbuc_.com_images_1062444883_1004168516393_1_original.jpeg
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251119T190000
DTEND;TZID=Europe/London:20251119T200000
DTSTAMP:20260423T124721
CREATED:20251010T124456Z
LAST-MODIFIED:20251010T124456Z
UID:13739-1763578800-1763582400@www.m4rd.org
SUMMARY:Your Rare Event Toolkit: Plan\, Run\, Inspire
DESCRIPTION:Thinking of running a Rare Disease event in 2026?  Whether it’s a seminar\, study day\, or conference — this session is for you. \nJoin Medics for Rare Diseases and our panel of Ambassadors who successfully organised Rare Disease events last year. Learn the ropes\, get inspired\, and discover how to make your event a success! \nWhat to expect\n💡 Resources and guidance – Find out what support and materials are available to help you plan and deliver your event.\n🧭 Top tips from experience – Hear from Ambassadors who’ve been there and done it\, and learn what worked for them.\n💬 Q&A session – Bring your questions and ideas to our Ambassador panel. \nWho should attend?\nMedics for Rare Diseases Ambassadors: medical students\, trainees\, and healthcare professionals interested in running a Rare Event or patient advocates looking to raise awareness of rare conditions in their community or institution. \nWhy attend\nYou’ll leave with practical advice\, ready-to-use resources\, and the confidence to host your own Rare Event in 2026 — helping your peers and colleagues to become Rare Aware 💜
URL:https://www.m4rd.org/event/your-rare-event-toolkit-plan-run-inspire/
LOCATION:ONLINE
CATEGORIES:Ambassadors,Rare Diseases,workshop
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/10/Ambassador-Events-Workshop.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251210T190000
DTEND;TZID=Europe/London:20251210T200000
DTSTAMP:20260423T124721
CREATED:20251010T133137Z
LAST-MODIFIED:20251023T212334Z
UID:13742-1765393200-1765396800@www.m4rd.org
SUMMARY:Rare 101: Train the Trainer – Plan Your Own Rare Disease Session
DESCRIPTION:Learn how to deliver engaging Rare Disease 101 talks with tips\, resources\, and insights from experienced ambassadors. \nThinking of running a Rare 101 training session in 2026? Whether you’re planning a full session or just have 10 minutes to introduce the basics\, this online training is designed to help you succeed. \nJoin our ambassadors—who have run successful sessions before—for an engaging and practical online workshop. Discover how to plan your own Rare 101 talk\, get inspired by real examples\, and access the resources you need to deliver a meaningful session. \nWhat to Expect: \nPractical Resources: Get tools and materials to help you plan and deliver your Rare 101 talk.\nExpert Insights: Learn the fundamentals of rare disease and understand how every healthcare professional can make a difference.\nTips & Tricks: Hear from ambassadors who have delivered sessions successfully.\nInteractive Q&A: Ask your questions and get advice from Helen\, our experienced trainer. \nSign up today to secure your spot and start planning your impactful Rare 101 session!
URL:https://www.m4rd.org/event/rare-101-train-the-trainer-plan-your-own-rare-disease-session/
LOCATION:ONLINE
CATEGORIES:Ambassadors,M4RD,Rare Diseases,workshop
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/10/Ambassador-Rare-101-Train-The-Trainer-.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260306T120000
DTEND;TZID=Europe/London:20260306T170000
DTSTAMP:20260423T124721
CREATED:20260109T135349Z
LAST-MODIFIED:20260120T094733Z
UID:14355-1772798400-1772816400@www.m4rd.org
SUMMARY:Demystifying the connection between patients and researchers
DESCRIPTION:Co-hosted by Medics for Rare Disease and King’s Health Partners Rare Disease Network \n📅 Date: Friday 6 March 2026 \n⏰ Time: 12:00 – 16:45 \n📍 Location: Great Hall\, King’s College London – Strand Campus\, WC2R 2LS (In-person event) \nAbout the event \nMedics for Rare Disease is pleased to be co-hosting a half-day\, in-person event with the King’s Health Partners Rare Disease Network. \nJoin us for a half‑day event exploring how patients\, researchers\, clinicians and industry partners can work together to drive inclusive\, impactful rare disease research. \nHear real stories\, take part in discussions\, and connect with others working to build equitable research partnerships. \nProgramme highlights\n* Presentations\n* High tea reception with poster displays (more details about Call For Abstracts coming soon)\n* Expert panel discussions. \nWho should attend \nThis event will be of interest to: \nPatients and patient advocates\n* Researchers and clinicians\n* Industry partners\n* Policy makers and research funders\n* Anyone interested in inclusive\, collaborative rare disease research \nRegistration\nBuy your tickets here
URL:https://www.m4rd.org/event/save-the-date-enhancing-inclusivity-in-rare-disease-research/
LOCATION:Kings College London\, Great Hall\, King’s College London – Strand Campus\, London\, London\, WC2R 2LS\, United Kingdom
CATEGORIES:Conference,Health Partnerships,Rare Diseases,Research,workshop
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/01/Untitled-design-1.png
ORGANIZER;CN="King's Health Partners":MAILTO:jennifer.1.burt@kcl.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260313T093000
DTEND;TZID=Europe/London:20260313T160000
DTSTAMP:20260423T124721
CREATED:20260306T092156Z
LAST-MODIFIED:20260306T092156Z
UID:14885-1773394200-1773417600@www.m4rd.org
SUMMARY:Rare Disease\, NF1 and Primary Care: Research Workshop
DESCRIPTION:Building collaborations to advance rare disease research in primary care \nAre you a primary care academic\, clinician with an interest in rare diseases\, rare-disease researcher\, or an industry partner curious about the future of primary care research in rare conditions? \nIf so\, this interactive research development workshop is for you. \nThis NW RDN NIHR-funded workshop will bring together stakeholders from across primary care\, secondary care\, academia\, patient-focused research\, and industry to explore how primary care can better support people living with rare diseases\, using neurofibromatosis type 1 (NF1) as an exemplar condition. \nThe session will explore:\n* the role of primary care in early recognition and diagnosis\n* diagnostic pathways and longitudinal management\n* coordination across services\n* opportunities to use routinely collected data and digital health tools to strengthen care \nBy identifying key evidence gaps and priority research questions\, the workshop aims to develop a collaborative\, patient-centred research agenda grounded in everyday primary-care practice. \nJoin us to connect\, set research priorities\, and shape collaborative studies that improve outcomes for people living with rare diseases.
URL:https://www.m4rd.org/event/rare-disease-nf1-and-primary-care-research-workshop/
LOCATION:Engine Rooms\, Birchwood Park\, Warrington\, Cheshire\, WA36 YNI
CATEGORIES:clinical,General Practice,HCPs,Lunch & learn,Public health,Rare Diseases,Research,workshop
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/03/Screenshot-2026-03-06-at-09.18.32.png
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