SAVE THE DATE An opportunity for clinicians and rare disease patient advocacy groups/advocates to come along to a lunchtime webinar with Medscape to hear about their large physician survey on rare diseases and best practices in rare disease education. Dr Lucy McKay (CEO M4RD) and Dr Will Evans (Leeds and PRISM Group and Clinical Lead […]
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 reconnect, welcome new faces, and ease into the year ahead together. There’s no formal agenda - just good conversation, shared experiences, and space to reflect […]
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.