Lister Prize Congratulations for Girish Mali
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).
Welcoming Keele University Interns: Growing Skills, Growing Impact
This year, we were delighted to welcome a group of talented interns from Keele University to the Ciliopathy Alliance UK. As part of their course, each student completed 75 hours of work with us over four months — and what they achieved in that short time has been remarkable.
Treasurer Required
We are looking for a treasurer to join our board of trustees to help us achieve our short-term goals and to ensure the long-term viability of the alliance. To do this we believe an enthusiastic treasurer with great communication skills, experience of working in financial management and some knowledge of the charity sector would be a great asset to our charity.
Spotlight on our Chair Hannah Mitchison - 'We can't do this without patients'
A Spotlight on our Chair, Hannah Mitchison: “We can’t do this without patients”
From a childhood spent next door to a medical research institute to three decades at the forefront of ciliopathy research, she reflects on science, advocacy and why progress depends on listening to those living with rare disease.
Hannah Mitchison grew up with science so close to home that it barely announced itself as anything special. Born in north London, she spent her early years living next door to her father’s workplace, a medical research institute in Mill Hill. There was a small garden gate between the family house and the laboratory. “He would just walk to work,” she recalls. “So, my dad was a complete scientist, and he kept going till he was in his eighties."
Alström Syndrome UK is pleased to join Genetic Alliance UK’s Future for Rare Steering Group
Alström Syndrome UK is pleased to join Genetic Alliance UK’s Future for Rare Steering Group. Together, we are taking a leading role in shaping the future of rare conditions policy in the UK.
The Future for Rare survey is designed to capture a comprehensive picture of the current experiences and priorities of the genetic, rare and undiagnosed community across the UK.
We welcome views from everyone, whether you are living with a genetic, rare and undiagnosed condition, caring for a loved one, or working for a support organisation, as a researcher or a healthcare professional. Every perspective is valued equally and will directly inform our recommendations to all four governments.
Share your experiences via the Future for Rare survey.
Please submit your response by Friday 24 April 2026.
For more information on how this information will inform the campaign, please visit the Future for Rare webpage.
Launch of Life Arc, Genetic Alliance and Beaon for Rare Diseases More Trials Better Data Faster Access Report
Our Chair, Hannah Mitchison, attended a meeting on 17th March 2026 at Parliament to launch the Life Arc, Genetic Alliance and Beacon for Rare Diseases More Trials Better Data Faster Access Policy report. It outlines key policy changes that would make a huge difference to people living with rare disease. Read the report here.
Lab Visits for our Interns and Volunteer
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.
Heterotaxy Foundation has joined 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.
Meet our Keele University Interns: Driving Innovation and Advocacy for Ciliopathy Awareness
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.
Reflections from the UK Cilia and Centrosome Network Meeting June 2025
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.
Sad News - Tess Harris
It is with great sadness that we advise you of the passing of one of the Ciliopathy Alliance’s biggest allies, Tess Harris, who peacefully passed away on March 1, 2024, at the age of 68.
Tess was a tireless advocate for Polycystic Kidney Disease (PKD) for over 20 years, as a Trustee and later becoming the CEO of the PKD Charity.