We held our first Webinar on 11th November 2023 via Zoom - videos of the presentations can be found here:-

-  Cilia and the role they play in the human body from Amelia Shoemark

-  Bendert De Graaf'spersonal story and about the BBS Group in the Nederlands and about Project Predict

-  Plans for the Ciliopathy Alliance UK over the next few years byFiona Copeland, Trustee of the Ciliopathy Alliance

Our next webinar is planned for May 2024 - please let us know if there are any specific subjects you would like us to cover.

Join us for our 2nd webinar on Monday, 3rd June 2024 from 1 p.m. to 2.30 p.m. to learn about:-

- The latest research into RP (Dr. Roly Megaw, University of Edinburgh) 

- The patient's perspective re sight loss research for Usher patients (Steve White, Cure Usher)

Register here and you will receive a confirmation email containing links on how to join the meeting.

BBS Global Day is a cooperative effort, coordinated by BBS Internationalwith support from BBS Family organisations in France, Italy, the Netherlands, the UK and North America.

Together they are taking action to raise awareness of BBS, and accelerate research and care for everyone affected by Bardet Biedl Syndrome.

Get Involved

Join Families from around the world as they pledge miles to walk or bike on BBS Global Day to raise funds for BBS research and suppport!

On Thursday, 19^th 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.

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. 

Please join us for our first webinar to learn about:-

- Cilia and how it affects the human body

- An exciting new project (PREDICT) which will help diagnose people earlier with ciliopathies.

Register here and you will receive an email containing information on how to join the meeting.