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.

Recent News

What happened when a group of children with the ciliopathy Bardet-Biedl syndrome took part in a research study aiming to improve their memory and brain capacity.

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Cilia 2016 Conference was held from 4 - 7 October 2016 at the Royal Tropical Institute in Amsterdam, The Netherlandse.

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The Ciliopathy Alliance 5th Anniversary Meeting was held on Monday, 19 October 2015 at the Institute of Child Health, London.

Below are the slides:

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