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 by Fiona 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.
BBS Global Day is a cooperative effort, coordinated by BBS Internationalwith support from BBS Family organisations in France, Italy, the Netherlands, the UK and North America.
Together they are taking action to raise awareness of BBS, and accelerate research and care for everyone affected by Bardet Biedl Syndrome.
Get Involved
Join Families from around the world as they pledge miles to walk or bike on BBS Global Day to raise funds for BBS research and suppport!
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
On the 15th January we took our interns and volunteer,Hannah Knocker, to visit the PCD research labs at the Institute of Child Health and the Diagnostic Labs at the Royal Brompton Hospital.
Here is Hannah's reflection:-
The visit offered valuable insight into both the research and clinical pathways involved in Primary Ciliary Dyskinesia. At the Institute of Child Health, we were welcomed into the laboratory environment and introduced to several areas of active research. We learned about lipid nanoparticle development and characterisation, including how particle size and charge are measured, before being given a clear and accessible introduction to PCD and its underlying biology.
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.
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 3rd Annual Conference – Rare Disease Research UK brought together researchers, clinicians, policymakers, industry partners, charities, and people with lived experience to highlight how collaboration is transforming rare disease research in the UK.
Our trustees, Kerry Leeson-Beevers and Audrey Hughes, contributed to the “Good Practice in Rare Disease PPIE” session. Kerry chaired the session and led the post-presentation panel discussion. Audrey joined Juliana Arcila Galvis to talk about the CILIAREN project, including how its Patient Advisory Group aims to ensure patients with renal ciliopathies have a meaningful voice.
The PPIE session was extremely well received and added real value to the day’s programme.
On Friday, 20th June 2025 - some of our Trustees attended the UK Cilia and Centrosome Network Meeting which was hosted by Hannah Mitchison our Chair. Thanks to Kerry Leeson-Beavers for updating the group about the CAUK's strategy.
It was Temi's first Cilia Scientific Meeting (as Treasurer of the Ciliopathy Alliance UK) - here are her reflections:-
Earlier this month, I had the opportunity to attend the UK Cilia & Centrosome Network Conference. As someone with a background in biochemistry and a professional focus on digital and AI transformation, I found the conference both intellectually stimulating and deeply affirming.
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).
After a long hiatus, the UK Cilia NetworkAutumn 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 science. The meeting organised by Prof. Pleasantine Mill(University of Edinburgh) and Dr. Girish Mali (University of Oxford) was an excellent showcase of the breadth of cilia research currently going on in the UK and Europe, as well as the interdisciplinary nature of cilia research.
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.