Rare Disease Day House of Commons 29th February 2024
cilia, pcd, ciliopathies, research, patient, rare disease, Ciliopathy Alliance, BBS, BardetBiedlSyndrome, Alstrom, ARPKD, NPHP, pkd, usher, jeune, joubert, RP
The Ciliopathy Alliance had a great afternoon at the Houses of Parliament as guests of Rare Disease UK where Andrew Stephenson (Minister for Health and Secondary Care) launched the governments plan to continue supporting patients with Rare Diseases. The standout points were the piloting of Syndromes Without a Name clinics for people with rare undiagnosed conditions and the 'Generation Study' where newborn babies witll be screended for rare diseases.
It was also a great opportunity for us to catch up with old friends and colleagues from the Rare Disease community.