Rare Disease Research UK Annual Conference 16th April 2027
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.