Ciliopathy Alliance Trustees, Elizabeth Forsythe and Kerry Leeson-Beevers, attended the Westminster Rare Disease Day reception at the House of Commons on Tuesday, 24th February 2026. The theme of Rare Disease Day 2026 is Equity, and it was clear from listening to the excellent speakers Alison and Sophie, that much more needs to be done to make things more equitable for people living with rare conditions. A huge thank you to Genetic Alliance UK for organising such a fabulous event and for highlighting lived experiences in their Rare Disease Day 2026 report'Equity for rare: Delivering fairer healthcare systems for people with rare conditions’

Minister Ashley Dalton announced the publication of the 2026 England Rare Disease Action Plan that has now been published and can be found here England Rare Diseases Action Plan 2026 - GOV.UK

Sue Farrington also shared information about the development of The NICE Quality Standards for Rare Conditions. A very big thank you to Sue and members of the wider rare disease community for their excellent leadership on this great work. NICE Quality Standard for Rare Diseases

There was a strong turnout for our Ciliopathy Community at Genetic Alliance's Afternoon Tea at the House of Commons to celebrate Rare Disease Day. Representatives from ASUK, PCD Support, Cure Usher and Retina UK were there with some of our trustees, Kerry Leeson-Beevers and Elizabeth Forsythe.