We are delighted to be the patient partner in a 4-year research programme funded through Horizon Europe, the European Union's framework program for research and innovation. “Therapies for Renal Ciliopathies” (TheRaCil) was in the call "Development of new effective therapies for rare diseases".
TheRaCiL brings together 16 partners - 15 institutions in 6 countries - 3 European consortia and the Ciliopathy Alliance with the ambition to develop appropriate and targeted treatments for paediatric renal ciliopathies. TheRaCil will benefit from a European Commission funding of 7,425,446 euros and a co-funding of 540,520 euros from UK Research and Innovation (UKRI).
Genetic Alliance UK – UK Rare Diseases Framework Consultation
Join us on Thursday, 11th June 2026 from 12 noon to 2 p.m. to help Genetic Alliance develop practical and realistic policies for Rare Diseases to feedback to the UK Government. We want to ensure that the voices of the Ciliopathy community are heard so would welcome, people with lived experience, support groups, researchers and clinicians to join us for this important workshop.
Register here for the meeting
The 3rd Annual Conference – Rare Disease Research UK brought together researchers, clinicians, policymakers, industry partners, charities, and people with lived experience to highlight how collaboration is transforming rare disease research in the UK.
Our trustees, Kerry Leeson-Beevers and Audrey Hughes, contributed to the “Good Practice in Rare Disease PPIE” session. Kerry chaired the session and led the post-presentation panel discussion. Audrey joined Juliana Arcila Galvis to talk about the CILIAREN project, including how its Patient Advisory Group aims to ensure patients with renal ciliopathies have a meaningful voice.
The PPIE session was extremely well received and added real value to the day’s programme.