Workshop Report: UK Regulatory and Access Frameworks in Rare Disease
19th and 20th November 2025
Involvement by design: How to address structural and cultural barriers to PPIE in academic research
Genetic Alliance UK has published a new report, ‘Involvement by design’, developed in collaboration with Rare Disease Research UK and the LifeArc Translational Centres for Rare Disease. The report explores why patient and public involvement and engagement (PPIE) remains difficult todeliver meaningfully in academic research and draws on insights from researchers at different careerstages to […]
Event: BICCS Annual Conference – 2025
11 & 12 December 2025
Survey: Rare Disease Research Landscape Directory
Help us map the landscape!
Early Career Researcher Award in PPIE – 2025
Deadline: 16 November 2025
UPNAT Wins Best Poster Award at Genomics England Research Summit
Congratulations UPNAT!
Survey: UK Regulatory and Access Frameworks
Share your experiences!
Rare Disease Day 2025
28 Feb 2025
Webinar: Introduction to Co-Production
27 March 2025
ELSI Node 1st Annual Conference – 2025
26 March 2025