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.
Have you signed up for the Gordon Conference yet?February 14 - 19, 2027 in Lucca, Italy.
The Cilia, Mucus and Mucociliary Interactions GRC is a premier, international scientific conference focused on advancing the frontiers of science through the presentation of cutting-edge and unpublished research, prioritizing time for discussion after each talk and fostering informal interactions among scientists of all career stages. The conference program includes an array of speakers and discussion leaders from institutions and organizations worldwide, concentrating on the latest developments in the field. The conference is five days long and held in a remote location to increase the sense of camaraderie and create scientific communities, with lasting collaborations and friendships. In addition to premier talks, the conference has designated time for poster sessions from individuals of all career stages, and afternoon free time and communal meals allow for informal networking opportunities with leaders in the field.
This GRC will focus on recent developments related to the biology of cilia and mucus in health and disease and emerging novel therapies targeting mucociliary dysfunction.
Sign up here
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
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.
To read our annual report click here.
To read the minutes of the AGM click here.
Any queries then please contact us.
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.
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) cilia in tumour cells and cancer, (3) cilia in metabolism, (4) cilia in neurons, (5) structure biology of cilia, basal bodies, centrioles, and centrosomes, (6) ciliary protein and membrane trafficking, (7) cilia in signalling and development, and (8) motile cilia or flagella.
Welcome to the Cilia2022 EMBO Workshop
Cilia2022 will be the fifth consecutive biennial European Cilia Conference, which will take place as a hybrid event in Cologne and virtually. We initiated this series in London (Cilia2012), followed by Paris (Cilia2014), Amsterdam (Cilia2016) and Copenhagen (Cilia2018).
Two decades of groundbreaking discoveries in cilia biology has revolutionized our understanding of the critical role of cilia in signaling, development, tissue homeostasis and disease. Ever since, this field and the community have been growing rapidly. Major breakthroughs continue to occur in cilia research with the number of publications still increasing exponentially. Therefore, there is a continued need for meetings that promote scientific exchange and networking in this highly interdisciplinary field.
Main Topics
- Molecular and clinical aspects of ciliopathies (including kidney, eye, brain, and motile ciliopathies)
- Cilia in tumour cells and cancer
- Cilia in metabolism
- Cilia in neurons
- Structure biology of cilia, basal bodies, centrioles, and centrosomes
- Ciliary protein and membrane trafficking Cilia in signalling and development
- Motile cilia or flagella
Cilia2022 – Patient’s Day
The first day of Cilia2022 is geared to allow active exchange between patient groups and researchers. Cilia2022 Patient's Day is free of charge to patients, family members/carers and patient groups.
We will start with a patient-scientist satellite meeting in a very interactive format. Short statements from a panel of leading cilia researchers and clinicians will be followed by a ‘World Café’ format discussion. This involves small tables of patients, their families, and support groups mixing with researchers to engage in in-depth dialogue.
Later that day, there will be a general patient-scientist exchange session.
After our keynote lecture, a welcome reception will bring together both scientists and patients, while we will have a unique science poster exhibition for patients and families.
Funding is available for travel and accommodation.
Please contact us to receive a link for a free registration and more information about funding.
Important Dates
February 2022
Opening abstract submission and online registration
June 30, 2022
Deadline “early bird” registration
July 11, 2022
Deadline abstract submission
August 08, 2022
Acceptance notification abstracts
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.
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.
We are delighted that the Heterotaxy Foundation have joined the Ciliopathy Alliance and we look forward to working with them.
Heterotaxy is a congenital condition, thought to be caused by the rotation of cilia in the developing embryo, that disrupts the normal left-right asymmetry of the body. This can result in any of the internal organs being misplaced, malformed, multiplied, or missing entirely. This disruption in asymmetry ensures that no two cases of heterotaxy are exactly alike.The cause of heterotaxy is not fully understood; some genetic links are being explored, but not all cases have been found to have a genetic cause, so research is still needed. Individuals with heterotaxy require lifelong multidisciplinary care and medical monitoring.
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.
We are delighted to learn that long term supporter of the Ciliopathy Alliance, Girish Mali,has been awarded the Lister Prize for his respiratory cilia work into Primary Ciliary Dyskinesia (PCD).
We’re thrilled to welcome three passionate and talented interns from Keele University to the Ciliopathy Alliance team. Each brings a unique perspective and skill set to help us advance our mission of supporting individuals and families affected by ciliopathies.
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 December 2022.
- To receive the Board’s Accounts for the period 1 April 2022 to 31 March 2023.
- Chair’s Annual Report.
- Approve the appointment of Mrs. Kerry Leeson-Beevers as a member of the Board for a term of 3 years.
- Approve the reappointment of Dr. Elizabeth Forsythe as a member of the Board for a 2nd term of 3 years.
- Approve the membership applications of Beth Cutting, Marina Arbi, Stephen White (CureUsher), Chloe Joyner (Usher Kids UK) and Faryal Ijaz.
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