Ciliopathy Alliance

The global voice of everyone affected by ciliopathies

The Ciliopathy Alliance is an alliance of medical researchers, doctors and patient organisations representing patients and families suffering from ciliopathy diseases.

Ciliopathy diseases are caused by defects in the function or structure of cilia, small hair-like protuberances, like antenna, found on the surface of virtually every cell in the human body. Once thought to be vestigial organs, defective cilia are now understood to underlie a number of devastating genetic conditions including:

Alstrom Syndrome, Laurence-Moon-Bardet-Biedl Syndrome, Nephronophthisis, Orofaciodigital Syndrome, Polycystic Kidney Disease, Primary Ciliary Dyskinesia, Senior-Loken Syndrome, Usher Syndrome.

The Alliance was formed to:

•Share knowledge and understanding
•Promote awareness of ciliopathies and the respective patient organizations
•Encourage collaborative research and facilitate where possible
•Apply for research funding from government, trusts and foundations