Future for Rare Disease Workshop - June 2026
On 11 June 2026, Ciliopathy Alliance, in partnership with Genetic Alliance UK, hosted a community workshop to gather input on the future of the UK Rare Diseases Framework. Bringing together patients, families, carers…
Online Workshop helping to shape the Future for Rare Policy
Genetic Alliance UK – UK Rare Diseases Framework Consultation
Join us on Thursday, 11th June 2026 from 12 noon to 2 p.m. to help Genetic Alliance develop practical and realistic policies for Rare Diseases to feedback t…
Rare Disease Day House of Commons 2026
Ciliopathy Alliance Trustees, Elizabeth Forsythe and Kerry Leeson-Beevers, attended the Westminster Rare Disease Day reception at the House of Commons on Tuesday, 24th February 2026. The theme of Rare Disease Day 2026 i…
AGM 21st OCTOBER 2025
We held our AGM on Tuesday, 21st October 2025 online.
It was a great oppportunity to welcome our two new Trustees, Audrey Hughes and Rhoda Akilapa. We also spent some time discussing the work we are planning this year…
Webinar on Skeletal Ciliopathies, Genetic Diagnosis and Support Groups
On Friday, 26th September we hosted the 3rd Webinar on Skeletal Ciliopathies, Genetic Diagnosis, and Support Groups.
Rhoda Akilapa, Consultant in Clinical Genetics at Guy's and St Thomas' NHS Foundation Trust gave an in…
Rare Disease Day House of Commons 28th February 2025
There was a strong turnout for our Ciliopathy Community at Genetic Alliance's Afternoon Tea at the House of Commons to celebrate Rare Disease Day. Representatives from ASUK, PCD Support, Cure Usher and Retina UK were th…
AGM 9th December 2024
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 Tra…
Cilia24 Dublin
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 Cili…
2nd Webinar - Sight Loss Research in Ciliopathies - Monday 3rd June 2024
We held our 2nd webinar on Monday, 3rd June 2024 and had two really interesting speakers learning about the latest research into RP from Dr. Roly Megaw, University of Edinburgh and about the patient's perspective into s…
Rare Disease Day House of Commons 29th February 2024
The Ciliopathy Alliance had a great afternoon at the Houses of Parliament as guests of Rare Disease UK where Andrew Stephenson (Minister for Health and Secondary Care) launched the governments plan to continue supportin…
Cilia2024 Sept 10-13 Dublin
Cilia2024 (hybrid) is the 6th running of the biennial European Cilia research meeting, taking place on September 10-13 in Dublin, Ireland. As the world’s largest scientific meeting for cilia and flagella research, Cilia…
1st Webinar 11th November 2023
We held our first Webinar on 11th November 2023 via Zoom - videos of the presentations can be found here:-
- Cilia and the role they play in the human body from Amelia Shoemark
- Bendert De Graaf's personal story and…
Notice of 12th AGM - 7 December 2023
Our Annual General Meeting will be held online on Thursday, 7th December 2023 from 11.30 a.m. to 12.30 p.m.
Agenda:-
Apologies for absence.
To approve the minutes of the 11th Annual General Meeting held on 1 Decemb…
Webinar - Learn about Cilia and Project PREDICT - Wednesday 15th Nov 1-3 p.m.
Please join us for our first webinar to learn about:-
- Cilia and how it affects the human body
- An exciting new project (PREDICT) which will help diagnose people earlier with ciliopathies.
Register here and you wil…
Patient Group Lunch - October 2023
On Thursday, 19th October 2023 the Ciliopathy Alliance UK hosted a lunch for our Ciliopathy Patient Groups. It was the first time since the pandemic that we have all met face-to-face and it was a great opportunity to me…
UK Cilia Network Edinburgh Meeting - Advances in Understanding Cilia Function and their role in disease
After a long hiatus, the UK Cilia Network Autumn meeting returned to an in-person format in Edinburgh. Cilia researchers from around the UK and even Denmark, Germany and Spain gathered to share the latest in cilia scien…
BBS Global Day 23rd September 2023
BBS Global Day is a cooperative effort, coordinated by BBS International with support from BBS Family organisations in France, Italy, the Netherlands, the UK and North America.
Together they are taking action to raise a…
Ciliopathy Alliance UK AGM 1 December 2022
The 11th Ciliopathy Alliance UK AGM was held online on 1 December 2022.
Prof. Hannah Mitchison (interim chair) conducted the formalities, which included: signing off the accounts, approving Dr. Roly Megaw as a member o…
SCilS Meetings in 2022
Tess Harris represented the Ciliopathy Alliance at two progress meetings of Studying Ciliary Signalling in Development and Disease (SCilS) – the EU-funded Marie Marie Sklodowska-Curie Innovative Training Network (ITN).
BEAT-PCD Patient Conference 2-3 December 2022 Online
Fiona Copeland was a guest speaker, talking about the PCD Service in the UK, at the BEAT-PCD Patient Workshop on 2-3 December 2022. The meeting organised jointly by patients with PCD and their families, researchers, and…
Cilia 2022 4-7 October 2022 Cologne
The Hybrid EMBO Workshop Cilia2022 was held 4-7 October 2022 in Cologne. The workshop covered 8 main topics: (1) molecular and clinical aspects of ciliopathies (including kidney, eye, brain, and motile ciliopathies), (2…
BEAT-PCD Meeting
At a satellite of the 2022 European Respiratory Society (ERS) annual meeting in Barcelona, a joint meeting of the ERS-sponsored BEAT-PCD Clinical Research Consortium and the European Reference Network ERN-LUNG was held…
Talk on ciliopathies in the 100,000 Genomes Project
Dr Gabrielle Wheway presented on 'Ciliopathies and the 100,000 Genomes' at the Ciliopathy Alliance AGM in March 2019.
CILIA 2016 International Conference
Cilia 2016 Conference was held from 4 - 7 October 2016 at the Royal Tropical Institute in Amsterdam, The Netherlands.
Ciliopathy Alliance 5th Anniversary Meeting 19 October 2015
The Ciliopathy Alliance 5th Anniversary Meeting was held on Monday, 19 October 2015 at the Institute of Child Health, London.
Below are the slides:
CILIA 2014 International Conference
Cilia 2014, the second International 'Cilia in Development and Disease Scientific Conference' was held from 18-21 November 2014, at the Institut Louis Pasteur, Paris, France.
CA Family Conference 2013
'Speaking Up for Children with Ciliopathies'
31 May - 2 June 2013