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Ciliopathy Alliance

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

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

Welcome to the Ciliopathy Alliance

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.

Recent News

Transition - Knowledge And Skills in Healthcare (T-KASH) Resources

Transition - Knowledge And Skills in Healthcare (T-KASH) Resources

19 September 2023

Let’s Get it Right for Young People!

Our friends at Breaking Down Barriers have been busy revamping the T-KASH (Transition - Knowledge And Skills in Healthcare) resources which were originally created in 2015 by young people from the Alström Syndrome UK (ASUK), Hear My Voice Youth Forum. The FREE resources are designed to support young people, families, and healthcare professionals, to help everyone understand the transition journey and the things that are important to young people as they grow up.

At the end of 2022, they began the process of updating the T-KASH resources to ensure they are inclusive and represent the needs of young people within the rare disease community. With the support of the Breaking Down Barriers (BDB) Experts by Experience Advisory Group and their  youth and young adult advisors, they have updated T-KASH and created brand new resources, including an animation that they hope will be used throughout the BDB network and beyond.

The resources aim to:

  • Draw attention to the knowledge and skills young people may be able to develop to manage their healthcare while having the best life possible
  • Prepare young people/families for identifying and coping with change at key points in their lives
  • Support young people to plan for their future and cope with their eventual transfer/settling into adult services 

The T-KASH resources are based around 12 logos that identify key areas of a young person’s life. These logos can be used in any health/speciality or education setting e.g. Hospital, GP, or school to signify different aspects of transitional care. Transition in health covers all aspects of a young person’s life and supports them as they mature and enter adulthood. 

You can check out the new resources on the BDB website https://breaking-down-barriers.org.uk/t-kash-transition-tools/

Here is a direct link to the animation Let's Get it Right for Young People! T-KASH tools (Transition - Knowledge And Skills in Healthcare) - YouTube