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X-WR-CALDESC:Events for Medics For Rare Disease
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DTSTART;TZID=Europe/London:20260306T120000
DTEND;TZID=Europe/London:20260306T170000
DTSTAMP:20260405T183606
CREATED:20260109T135349Z
LAST-MODIFIED:20260120T094733Z
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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
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DTSTART;TZID=Europe/London:20260313T093000
DTEND;TZID=Europe/London:20260313T160000
DTSTAMP:20260405T183606
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
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