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X-WR-CALDESC:Events for Medics For Rare Disease
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DTSTART;TZID=Europe/London:20260313T093000
DTEND;TZID=Europe/London:20260313T160000
DTSTAMP:20260502T144011
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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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260228
DTEND;VALUE=DATE:20260301
DTSTAMP:20260502T144011
CREATED:20260114T120713Z
LAST-MODIFIED:20260210T154504Z
UID:14386-1772236800-1772323199@www.m4rd.org
SUMMARY:Rare Disease Day 2026: #ShowYourStripes & #LearnYourStripes
DESCRIPTION:Rare Disease Day 2026 is your chance to stand with the 3.5 million people in the UK living with a rare disease\, and to take one small action that can make a big difference. \nSince 2022\, Medics for Rare Disease has invited healthcare professionals (HCPs)\, medical students and supporters to #ShowYourStripes by wearing stripy socks to spark conversations\, raise awareness and show solidarity with the rare community. \nIn 2026\, we’re going one step further. \nAlongside dusting off your stripey socks\, we’re launching #LearnYourStripes\, a major push to deepen understanding of rare diseases across healthcare and beyond. This year\, we’re asking HCPs not only to show their support\, but to build their rare disease knowledge by completing our 5‑minute Rare Disease training video 🔗 https://www.m4rd.org/rarediseaseday/ \nWhy this matters \nWhile there are thousands of individual rare diseases\, people affected by them face strikingly similar challenges. \n* 3.5 million people in the UK are living with a rare disease\, as many as those living with cancer \n* Patients wait an average of 5 years for a diagnosis\, often being passed between specialists and undergoing unnecessary tests \n* Despite this\, there is no standardised rare disease education in UK medical school curricula or specialty training \n* In a 2023 Medics for Rare Disease study\, 73% of medical students surveyed could not correctly define a rare disease \nGreater rare awareness in healthcare can shorten diagnostic journeys\, reduce patient harm and improve experiences for people living with rare conditions. \nHow to get involved \nIn the week running up to Rare Disease Day (Saturday 28 February 2026)\, we’re inviting healthcare professionals and supporters to: \n1. #ShowYourStripes \n* Wear a pair of stripey socks at work or at home\n* Share a photo on social media using #ShowYourStripes\n* Tag @MedicsForRare to help spread the message \n2. #LearnYourStripes \n* Complete our 5‑minute Rare Disease training video 🔗 https://www.m4rd.org/rarediseaseday/\n* Encourage colleagues\, teams and students to do the same\n* For enquiries about in‑person training\, email: hello@m4rd.org
URL:https://www.m4rd.org/event/rare-disease-day-2026-showyourstripes-learnyourstripes/
LOCATION:Cheshire
CATEGORIES:Global Health,HCPs,Policy & Advocacy,Public Engagement,Public health,Rare Disease
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2026/01/Medics_RDD26_INFOGRAPHIC_SOCIAL_POSTS_1080x1080px_260114_V1-2_FHO.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260226T140000
DTEND;TZID=Europe/London:20260226T153000
DTSTAMP:20260502T144011
CREATED:20260206T101350Z
LAST-MODIFIED:20260206T101350Z
UID:14789-1772114400-1772119800@www.m4rd.org
SUMMARY:When to Suspect a Rare Disease in Any Practice Setting
DESCRIPTION:Join Medscape for a live educational session\, ‘When to Suspect a Rare Disease in Any Practice Setting’\, featuring our very own CEO Lucy McKay.  \nThis live-streamed event will take place on February 26\, 2026\, at 2 PM GMT / 3 PM CET and will explore practical insights to help clinicians recognize when a rare disease may be at play across diverse clinical settings.  \nThe event will be hosted live on Medscape’s social media platforms—no registration is required. Simply follow @Medscape to watch once the event goes live.
URL:https://www.m4rd.org/event/when-to-suspect-a-rare-disease-in-any-practice-setting/
LOCATION:LIVE STREAM
CATEGORIES:clinical,General Practice,Global Health,HCPs,Lectures,Medical Students,Public Engagement,Public health,Rare Disease
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/02/ME0152025_SocialAd-1.png
ORGANIZER;CN="Medscape Education Global":MAILTO:aduncan@webmd.net
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260211T193000
DTEND;TZID=Europe/London:20260211T203000
DTSTAMP:20260502T144011
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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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251103T130000
DTEND;TZID=Europe/London:20251103T140000
DTSTAMP:20260502T144011
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:20221118T090000
DTEND;TZID=Europe/London:20221118T120000
DTSTAMP:20260502T144011
CREATED:20220928T101153Z
LAST-MODIFIED:20220928T101310Z
UID:10090-1668762000-1668772800@www.m4rd.org
SUMMARY:Understanding ME/CFS\, symptom crossover with hEDS/HSD and implications for Long Covid
DESCRIPTION:Dr Sue Pemberton PhD is a qualified occupational therapist who was involved in setting up the Leeds based Chronic Fatigue Syndrome Service in 1990\, one of the first NHS clinics specifically for the condition. She wrote the original therapy programme and worked clinically with the service for over 22 years\, in addition to holding a number of management positions within the NHS. \nSue has co-authored the self-help manual Fighting Fatigue: a practical guide to managing the symptoms of CFS/ME\, Hammersmith Press and contributed to the British Association for CFS/ME Therapists Manual. \nSue will explore the implications of Chronic Fatigue Syndrome and Long Covid
URL:https://www.m4rd.org/event/10090/
LOCATION:LIVE STREAM
CATEGORIES:HCPs,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/09/sue-p.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20221021T090000
DTEND;TZID=Europe/London:20221021T130000
DTSTAMP:20260502T144011
CREATED:20220928T100847Z
LAST-MODIFIED:20220928T101534Z
UID:10084-1666342800-1666357200@www.m4rd.org
SUMMARY:Hypermobility spectrum disorders(HSD) and Hypermobile Ehlers-Danlos syndrome (hED)
DESCRIPTION:Training for Health Professionals on hypermobility spectrum disorders(HSD) and Hypermobile Ehlers-Danlos syndrome (hEDS) \nThe online course includes presentations and interactive case-based sessions for Health Professionals and those who wish to gain further knowledge and advance their clinical practice in assessing and management children and adults with Hypermobility Spectrum Disorders\, Hypermobile Ehlers Danlos Syndromes and associated conditions.
URL:https://www.m4rd.org/event/training-for-health-professionals-hsd-heds/
LOCATION:LIVE STREAM
CATEGORIES:HCPs,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/09/TRAINI1.png
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