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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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

Recent News

Global PCD Conference

A wonderful Captain's Day at Woburn Golf Club

Lister Prize Congratulations for Girish Mali