RAREsummit25: the UK’s leading truly patient-centred rare disease conference

Thu 6 November 2025

Wellcome Genome Campus

CamRARE's RAREsummit25 welcomes and unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By reflecting on progress made, showcasing best practices and new developments, sharing knowledge and experience, and finding ways to work together, the journey towards better diagnosis, treatment and support for patients and their families is smoother and more certain.


RAREsummit25 Highlights - see the full programme and speakers in the agenda section below:

- Celebrating 10 Years of CamRARE – opening keynote sharing 10 moments of impact.
- Legacy in Action – hear how past RAREsummit ideas and connections grew into real-world change in research, policy, and innovation.
- Patient-Led Research & Innovation – Rare Disease Research Network (RDRN) showcase and powerful case studies of patient-driven projects.
- Technology for Rare Diseases – from re-imagining existing tech to exploring digital twins in healthcare.
- Rare Diseases & Human Rights – with the RDI–Lancet Commission, linking rights-based approaches to research, policy, and care.
- Mental Wellbeing & Rare Conditions – lived experiences, young adult voices, psychologists, and workplace perspectives.
- Parents as Changemakers – balancing career, family, and rare disease advocacy, with insights from researchers, industry leaders, and families.
- Workshops & Breakouts – interactive sessions on evidence for medicine access, naming rare genetic diseases, and social listening.
- Global Challenges – panels on climate change & rare diseases and the future of rare disease innovation.
- Networking & Collaboration – dedicated spaces for connection, exhibitor showcases, posters, and a "Meet to Collaborate" zone.
- Exclusive Extras – optional Wellcome Genome Campus tour and a networking dinner at historic Hinxton Hall.

Cost: Tickets from £30.00