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'spersonal story and about the BBS Group in the Nederlands and about Project Predict
- Plans for the Ciliopathy Alliance UK over the next few years byFiona Copeland, Trustee of the Ciliopathy Alliance
Our next webinar is planned for May 2024 - please let us know if there are any specific subjects you would like us to cover.
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 sight loss research for Usher patients from Steve White, Cure Usher
The webinar demonstrated that there is much to be hopeful for in respect of sight loss research.
Click here to see the video
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 on 03/09/22, to engage clinicians, researchers and patient advocacy representatives in a first face to face meeting together since the pandemic.
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, Cilia2024 will bring together cilia researchers, clinicians, patients and patient representatives from across the globe, partaking in a wide ranging programme incorporating 11 scientific sessions, 4 keynote lectures, 35+ oral presentations, 22 flash talks and 3 poster sessions. Cilia2024 will also provide an elevated forum for patient-scientist-pharma exchange via a specific Patient Event on Sept 09 and 10. We do hope you will join us!
Registration for Researchers and Clinicians
Registration for Patients and Carers
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 of the board and approving the membership application of Prof. Dagmar Wachten. Hannah also gave the annual report and said thank you to Steve Thacker who sadly passed away earlier this year for his many years of service as a Trustee for the Ciliopathy Alliance.
On 2nd October 2023, Genomics Englandannounced the 200 rare conditions which will be looked as part of its Generation Study, which aims to start in hospitals in late 2023.
The Ciliopathy Alliance are delighted that Primary Ciliary Dyskinesia (PCD), one of many ciliopathies, will be included in this project.
To find out more about PCD, contact PCD Support UK
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 supporting patients with Rare Diseases. The standout points were the piloting of Syndromes Without a Name clinics for people with rare undiagnosed conditions and the 'Generation Study' where newborn babies witll be screended for rare diseases.
It was also a great opportunity for us to catch up with old friends and colleagues from the Rare Disease community.
The Ciliopathy Alliance Scientific Advisory Board is composed of researchers and doctors involved or interested in ciliopathy research and treatment of patients with ciliopathies.
The Ciliopathy Alliance are delighted to be involved with this exciting new UK Renal Ciliopathies National Network as part of the bigger UK Rare Disease Research Platform,with a £14 million investment over 5 years for rare diseases.