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  • Rare Disease Day 2026: Launch Webinar

    ONLINE

    Join one of two upcoming webinars on either the 27 or 28 October for a first look at Rare Disease Day 2026! Learn more about the resources which have been […]

  • EDIRA ‘Let’s COCO: Celebrating the Doers

    Edgbaston Park Hotel

    A Hybrid event celebrating DOERS who showcase their Collaboration - Outreach - Co-creation projects with impactful Outcomes. This is your chance to be part of a dynamic, hybrid gathering.

  • Your Rare Event Toolkit: Plan, Run, Inspire

    ONLINE

    Thinking of running a Rare Disease event in 2026? Whether it’s a seminar, study day, or conference — this session is for you. Join Medics for Rare Diseases and our […]

  • 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.