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X-WR-CALDESC:Events for Medics For Rare Disease
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DTSTART;TZID=Europe/London:20260313T093000
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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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DTSTART;TZID=Europe/London:20260122T150000
DTEND;TZID=Europe/London:20260122T153000
DTSTAMP:20260501T020403
CREATED:20260109T145550Z
LAST-MODIFIED:20260109T150302Z
UID:14366-1769094000-1769095800@www.m4rd.org
SUMMARY:Medics for Rare Disease Ambassador & Alumni Brew
DESCRIPTION:Kick off the New Year with a cuppa and a catch-up at our New Year Ambassador Brew ☕ \nThis relaxed\, virtual get-together is a chance for our Ambassador community to reconnect\, welcome new faces\, and ease into the year ahead together. There’s no formal agenda – just good conversation\, shared experiences\, and space to reflect on what’s coming up in 2026 for Medics for Rare Disease. \nWe’ll:\n* Say hello (or welcome back!)\n* Share a few informal updates from the team\n* Chat about what’s ahead for ambassadors this year\n* Create space for questions\, ideas\, and connection \nWhether you’ve been an ambassador/alumni for years or you’re relatively newly involved\, this is a low-pressure\, friendly space to join with a brew of your choice and be part of the conversation. \n👉 Grab a drink\, bring yourself\, and start the year with community.
URL:https://www.m4rd.org/event/medics-for-rare-disease-ambassador-alumni-brew/
LOCATION:ONLINE
CATEGORIES:Ambassadors,Lunch & learn,Rare Disease
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/01/Ambassador-Online-Brew.png
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DTSTART;TZID=Europe/London:20211101T120000
DTEND;TZID=Europe/London:20211101T124500
DTSTAMP:20260501T020403
CREATED:20211006T131231Z
LAST-MODIFIED:20211006T131231Z
UID:8471-1635768000-1635770700@www.m4rd.org
SUMMARY:Rare disease education: insights on what clinicians know\, want and need
DESCRIPTION:SAVE THE DATE \nAn opportunity for clinicians and rare disease patient advocacy groups/advocates to come along to a lunchtime webinar with Medscape to hear about their large physician survey on rare diseases and best practices in rare disease education. \nDr Lucy McKay (CEO M4RD) and Dr Will Evans (Leeds and PRISM Group and Clinical Lead at Mendelian Health) will join Medscape’s Clinical Strategist S Christy Rohani-Montez and Director of Strategic Partnerships\, Jennifer Bomberger to discuss rare disease education and give insights on what clinicians know\, want and need!
URL:https://www.m4rd.org/event/rare-disease-education-insights-on-what-clinicians-know-want-and-need/
LOCATION:ONLINE
CATEGORIES:clinical,Lunch & learn,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/10/1633446900824.jpeg
ORGANIZER;CN="Medscape Education Global":MAILTO:aduncan@webmd.net
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