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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 Kingdom

    Co-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 […]

  • Rare Disease, NF1 and Primary Care: Research Workshop

    Engine Rooms Birchwood Park, Warrington, Cheshire

    This 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.