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.
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
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.
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 meet new people and build new relationships.
Representatives for Alstrom, BBS, PCD and Usher attended as well as Hannah Mitchison, Chair of CAUK and Elizabeth Forsythe, Trustee of CAUK.
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
Fiona Copeland, as ex-chair of PCD Support Group UK,attended their Medical Board Meeting on Friday, 19th May 2023 in London. Over 70 healthcare professionals met from across the UK to discuss the 'Clinical Priorities in PCD'. We learned about the latest physiotherapy studies using MRI Scanning, as well as a study looking at nighttime coughs and a study comparing nasal inflammation in people with PCD, CF and healthy controls. We also learnt all about the latest updates in genetic research, diagnostics, and clinical management of patients. This great illustration captures the talks of the day.
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.
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).
Royal Society Publishing has recently published a special issue of Philosophical Transactions B entitled Unity and diversity of cilia in locomotion and transport, a Theo Murphy meeting issue compiled and edited by Kirsty Y Wan and Gáspár Jékely.
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 will receive an email containing information on how to join the meeting.