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Ciliopathy Alliance

We want to improve the lives of children and adults affected by ciliopathies - syndromes, diseases or conditions caused by dysfunctional or defective cilia.

We want to improve the lives of children and adults affected by ciliopathies - syndromes, diseases or conditions caused by dysfunctional or defective cilia.

Welcome to the Ciliopathy Alliance

The Ciliopathy Alliance brings together patient support groups, researchers, doctors and allied health professionals representing patients and families living with and affected by ciliopathies - diseases caused by defects in the function or structure of cilia.

Dysfunctional cilia are known to underlie a number of often chronically disabling and sometimes life-threatening genetic conditions. They affect multiple systems, causing blindness, deafness, chronic respiratory infections, kidney disease, heart disease, infertility, obesity and diabetes.

Over 20 ciliopathies have been identified and more are suspected, with an estimated 1 in 1,000 people affected.

Our shared vision is to improve the quality of life for people living with ciliopathy syndromes and conditions. Please join us in this endeavour.

About cilia
Ciliopathies
Ciliopathy Patient Groups
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Recent News

Notice of 12th AGM - 7 December 2023

Notice of 12th AGM - 7 December 2023

14 November 2023

Our Annual General Meeting will be held online on Thursday, 7th December 2023 from 11.30 a.m. to 12.30 p.m.

Agenda:-

  1. Apologies for absence.
  2. To approve the minutes of the 11th Annual General Meeting held on 1 December 2022.
  3. To receive the Board’s Accounts for the period 1 April 2022 to 31 March 2023.
  4. Chair’s Annual Report.
  5. Approve the appointment of Mrs. Kerry Leeson-Beevers as a member of the Board for a term of 3 years.
  6. Approve the reappointment of Dr. Elizabeth Forsythe as a member of the Board for a 2nd term of 3 years.
  7. Approve the membership applications of Beth Cutting, Marina Arbi, Stephen White (CureUsher), Chloe Joyner (Usher Kids UK) and Faryal Ijaz.
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Webinar - Learn about Cilia and Project PREDICT - Wednesday 15th Nov 1-3 p.m.

Webinar - Learn about Cilia and Project PREDICT - Wednesday 15th Nov 1-3 p.m.

30 October 2023

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.

 

 

 

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Patient Group Lunch - October 2023

Patient Group Lunch - October 2023

22 October 2023

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.

 

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