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Dr Dan Jagger welcomes delegates to the Cilia Awareness Day

Ciliopathy Alliance Ciliopathy Alliance

Delegates at the Cilia Awareness Day at the Institute of Child Health, London

Ciliopathy Alliance Ciliopathy Alliance

Fiona Copeland on the impact of Primary Ciliary Dyskinesia

Ciliopathy Alliance Ciliopathy Alliance

Tess Harris on the impact of Polycystic Kidney Disease

Ciliopathy Alliance Ciliopathy Alliance

Kerry Leeson-Beevers on the impact of Alström Syndrome

Ciliopathy Alliance Ciliopathy Alliance

Rare Disease UK on the rare disease strategy for the EU

Ciliopathy Alliance Ciliopathy Alliance

Delegates visit the Exhibition Stands

Ciliopathy Alliance Ciliopathy Alliance

Dr Dan Jagger introduces Kay Parkinson of Alström Syndrome UK

Ciliopathy Alliance Ciliopathy Alliance

Dr Claire Hogg on the AGNSS diagnostic service for Primary Ciliary Dyskinesia

Ciliopathy Alliance Ciliopathy Alliance

The Genetic Alliance

Ciliopathy Alliance Ciliopathy Alliance

Delegates visiting the Exhibition Stands

Ciliopathy Alliance Ciliopathy Alliance

Kay Parkinson interviewed about Alström Syndrome

Ciliopathy Alliance Ciliopathy Alliance

Delegates visiting the Exhibition Stands

Ciliopathy Alliance Ciliopathy Alliance

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.

Find out more about the structure and function of cilia...

Find out more about ciliopathies...

Find out more about ciliopathy Patient Groups...