Ciliopathy Alliance UK

Ciliopathy Alliance UK

At a glance

Causes

  • Health and well being / research and care

Other details

Organisation type: 
Charity
Geographical remit: 
International

Objectives

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.

Activities

  1. We promote, support and stimulate the sharing of knowledge and understanding of ciliopathies, nationally and internationally. 
  2. We encourage patients to take part in ciliopathy research.
  3. We provide information to people/organisations that support patients with ciliopathies.
  4. We promote the interests of people with ciliopathies to governments and other relevant organisations.
  5. Fundraise and apply for grants to facilitate these activities.

Current opportunities

Our charity is set up to improve the lives of people affected by ciliopathies - conditions caused by dysfunctional or defective cilia.  We are...