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
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.
The Ciliopathy Alliance are delighted to welcome Temitope Oyefuga as a Trustee. Temitope brings with her a wealth of experience in the finance and charity sectors and will be a welcome addition to our team.
Find out more about her and our trustees click here.
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
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.
The Ciliopathy Alliance Scientific Advisory Board is composed of researchers and doctors involved or interested in ciliopathy research and treatment of patients with ciliopathies.
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.
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.