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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.

About cilia
Ciliopathies
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Recent News

AGM 9th December 2024

AGM 9th December 2024

06 January 2025

Our AGM was held on Monday, 9th December 2024 from 10 a.m. to 12 noon online.  We were pleased to welcome a number of our members.

We presented a summary of the year 2023-24:-

·       We participated in the European Training Network for studying Ciliary Signalling in development and disease ('SCilS'), funded by EU Horizon 2020, as the primary patient partner.

·         We represented ciliopathy patients at the European Reference Network for Rare Kidney Diseases (ERKNet)

·         We are the patient partner for a new project ‘TheRaCiL’ and CiliaREN.

·         The Ciliopathy Alliance website underwent an update.

·         We represented the patients on the Cilia24 organising committee.

·         We supported the UK Cilia Network to hold their meeting in Edinburgh in September 2023.

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New Treasurer Appointed

New Treasurer Appointed

11 November 2024

The Ciliopathy Alliance are delighted to welcome Temitope Oyefuga as a Trustee. Temitope brings with her a wealth of experience in the finance and charity sectors and will be a welcome addition to our team.

Find out more about her and our trustees click here.

 

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Cilia24 Dublin

Cilia24 Dublin

15 October 2024

We held a patient meeting ahead of the main meeting and a number of clinicians and researches were invited to join our 'World Cafe'.  This gave us the opportunity to work together on the most pressing issues of the Ciliopathy patient community.  Over 70 of us, were given themes to talk about and there was no shortage of ideas.

We followed this up with a Q&A session with clinicians and researchers.

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