Our purpose

To improve the lives of children and adults affected by ciliopathies - syndromes, diseases or conditions caused by dysfunctional or defective cilia.

About Us

What we do

  1. Promote, support and stimulate the sharing of knowledge and understanding of ciliopathies, nationally and transnationally
  2. Encourage and facilitate communication between patients, health professionals, researchers and other organisations that support people with ciliopathies
  3. Promote awareness of ciliopathies and the respective patient organisations
  4. 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
  5. Invite and encourage patient involvement in research and clinical management of ciliopathies
  6. 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
  7. Provide information and educational materials for health professionals and similar with the aim of improving diagnosis, clinical management and social care
  8. 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
  9. Organise conferences, symposia, workshop and similar, and support the publication and/or dissemination of information and best practice about ciliopathies
  10. 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
  • Laurence-Moon-Bardet-Biedl Society
  • 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

How we are funded

The Ciliopathy Alliance is funded by voluntary donations.

Download Annual Report and Accounts to 31 March 2017
Download Annual Report and Accounts to 31 March 2016
Download Annual Report and Accounts to 31 March 2015
Download Annual Report and Accounts to 31 March 2014
Download Annual Report and Accounts to 31 March 2013

Board of Trustees

Dr David Miller
Dr David MillerChair
Prof Phil Beales
Prof Phil BealesTrustee
Dr Elizabeth Forsythe
Dr Elizabeth ForsytheTrustee
Mrs Claire Glen
Mrs Claire GlenTrustee
Mr Michael Parker
Mr Michael ParkerTrustee
Mr Stephen Thacker
Mr Stephen ThackerTrustee
Dr Toby Hurd
Dr Toby HurdTrustee
Ms Tess Harris
Ms Tess HarrisSecretariat

Membership

Membership is open to individuals and organisations with an interest in ciliopathies. Find out about the different categories of membership.

Full (Organisation)

Legally constituted non-profit patient organisation.

Affiliate (Organisation)

Patient organisation not yet legally constituted.

Associate (Organisation)

Organisation which promotes and/or takes part in the activities of the Ciliopathy Alliance.

Associate (Individual)

Individual who promotes and/or takes part in the activities of the Ciliopathy Alliance.

The Board of the Ciliopathy Alliance will decide on the acceptance of members and recommend for approval by the Full Members.

Contact us for more information or complete our membership form