Patient Group Lunch - October 2023
cilia, pcd, ciliopathies, collaboration, patient, rare disease, BBS, BardetBiedlSyndrome, Alstrom, pkd
On Thursday, 19th October 2023 the Ciliopathy Alliance UK hosted a lunch for our Ciliopathy Patient Groups. It was the first time since the pandemic that we have all met face-to-face and it was a great opportunity to meet new people and build new relationships.
Representatives for Alstrom, BBS, PCD and Usher attended as well as Hannah Mitchison, Chair of CAUK and Elizabeth Forsythe, Trustee of CAUK.