Medics for Rare Disease Ambassador & Alumni Brew
Kick off the New Year with a cuppa and a catch-up at our New Year Ambassador Brew ☕ This relaxed, virtual get-together is a chance for our Ambassador community to […]
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Rare Disease, NF1 and Primary Care: Research Workshop
Engine Rooms Birchwood Park, Warrington, CheshireThis interactive research development workshop brings together clinicians, academics, researchers and industry partners to explore how primary care can better support people living with rare diseases. Using neurofibromatosis type 1 (NF1) as an exemplar condition, the session will examine early recognition, diagnostic pathways, care coordination, and opportunities for research using routinely collected data and digital health tools. Participants will collaborate to identify evidence gaps and develop a patient-centred research agenda grounded in everyday primary-care practice.