The Ciliopathy Alliance are delighted to be involved with this exciting new UK Renal Ciliopathies National Network as part of the bigger UK Rare Disease Research Platform,with a £14 million investment over 5 years for rare diseases. 

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.

On Friday, 26th September we hosted the 3rd Webinar on Skeletal Ciliopathies, Genetic Diagnosis, and Support Groups.

Rhoda Akilapa, Consultant in Clinical Genetics at Guy's and St Thomas' NHS Foundation Trust gave an insightful presentation on skeletal ciliopathies and how they are diagnosed.  Matthew Carr, Special Projects Manager from Retina UK told us about the work of the charity who are celebrating their 50th Anniversary this year and the role of support groups in supporting patients after a genetic diagnosis. Fiona Copeland finished the meeting discussing how the Ciliopathy Alliance can support patients where there are no established support groups. 

To watch the webinar click here