RSE Network Support Meeting
Rett syndrome is a rare, genetic, neurological disorder affecting mainly females (1:10,000) and very few males. It is present from conception. After a period of ‘near normal’ development, the child […]
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King’s Health Partners Rare Disease Grand Round: Hepatobiliary disease
ONLINEJoin 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 […]
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Demystifying the connection between patients and researchers
Kings College London Great Hall, King’s College London – Strand Campus, London, London, United KingdomCo-hosted by Medics for Rare Disease and King’s Health Partners Rare Disease Network 📅 Date: Friday 6 March 2026 ⏰ Time: 12:00 – 16:45 📍 Location: Great Hall, King’s College […]
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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.