Demystifying the connection between patients and researchers
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 […]
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 […]
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.
Medics for Rare Disease is proud to support the Swansea Rare Disease Study Day, hosted alongside Swansea University. This free event brings together clinical experts, patient speakers, and multiple charities […]
🗓 Date: 2–4 June 2026 📍 Location: Prague & Online 🔗 Register: Sign up here Join EURORDIS‑Rare Diseases Europe for the largest patient‑led rare disease policy event in Europe! Over […]