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Ciliopathy Alliance UK AGM

Nov 28, 2023

Fiona Copeland, Former PCD Support UK Chair attends Ciliopathy Alliance UK AGM

The 11th annual Ciliopathy Alliance UK AGM was held online on 1 December 2022, hosted by Professor Hannah Mitchinson, and attended by former PCD Support UK Chair, Fiona Copeland and other board members. 

Fiona shared the achievements of the alliance since its conception in 2012, which included five successful Cilia Conferences which have been held across Europe, a clinic genetics service being commissioned for rare diseases and becoming a patient partner for SCILS European Training Network for studying Ciliary Signalling in Development disease. 

The AGM provided an opportunity to discuss the future of the group and reconfirm their aims and understand what they need to prioritise moving forward based on members feedback. 

With a guest talk from Helen May-Simera who spoke about the recent Cilia 2022 meeting, 33 people attended talks, workshops and provided a space for patients to interact. Helen shared how great it was for patients and researchers to share experiences with lots of ideas from patients on how to improve lives for people with ciliopathies. 

Watch this space for a potential patient's day happening in the future. 

To read the full report of the AGM, please visit the Cililopathy Alliance Website