We want to improve the lives of children and adults affected by ciliopathies - syndromes, diseases or conditions caused by dysfunctional or defective cilia.
The means to achieve our purpose
- Promote, support and stimulate the sharing of knowledge and understanding of ciliopathies, nationally and transnationally
- Encourage and facilitate communication between patients, health professionals, researchers and other organisations that support people with ciliopathies
- Promote awareness of ciliopathies and the respective patient organisations
- Promote, sponsor and/or participate in national and transnational laboratory, transitional and clinical research into ciliopathies and related syndromes, with the aim of developing effective therapies and management of patients with ciliopathies
- Invite and encourage patient involvement in research and clinical management of ciliopathies
- Provide information that will benefit people with ciliopathies, in particular to those patients who do not have a condition/disease-specific support group and those in hard-to-reach geographical/ethnic communities
- Provide information and educational materials for health professionals and similar with the aim of improving diagnosis, clinical management and social care
- Communicate with/ lobby national and international governments and other relevant organisations to promote the interests of people with ciliopathies and encourage an integrated approach to their health and social care
- Organise conferences, symposia, workshop and similar, and support the publication and/or dissemination of information and best practice about ciliopathies
- Co-operate with other charities, alliances, voluntary organisations and statutory bodies to further the interests of people with ciliopathies
History and constitution
The Ciliopathy Alliance was formed in the UK in March 2010 and launched at a Cilia Awareness Day in November 2010.
Founder members of the Ciliopathy Alliance include:
Alström Syndrome UK
Polycystic Kidney Disease Charity UK
Primary Ciliary Dyskinesia Family Support Group UK
Prof Phil Beales, Molecular Medicine Unit, Institute of Child Health and Great Ormond Street Hospital for Children, University College London
Dr Claire Hogg, Royal Brompton Hospital
Dr Daniel Jagger, Ear Institute, University College London
Dr Hannah Mitchison, Molecular Medicine Unit, Institute of Child Health, University College London
Board of Trustees
Dr David Miller (Chair)
Prof Phil Beales
Mrs Claire Glen
Mr Michael Parker
Mr Stephen Thacker
The Ciliopathy Alliance is a Registered Charity No 1148034
Company Limited by Guarantee in England No 7842342
Registered Office: 91 Royal College St, London NW1 0SE.
How we are funded
The Ciliopathy Alliance receives no government funding.