Working together
In 2010 we formed an alliance with other groups of conditions where the cause of the problem is cilia-related. Many of these conditions are rare and consequently attract minimal research funding into treatments and potential cures. The Ciliopathy Alliance represents patients and their families suffering from ciliated diseases including PCD, Alstrom Syndrome, Laurence-Moon-Bardet-Biedl Syndrome and Polycystic Kidney Disease. Together with medical researchers and clinicians interested in these conditions we hope to:
- Share knowledge and understanding
- Promote awareness of ciliopathies and the respective patient organisations
- Encourage collaborative research and facilitate where possible
- Apply for research funding from government, trusts and foundations