Hello everyone and welcome to our Summer newsletter. Quite a bit of change with our trustees. We’re sad to say goodbye to one of longest serving trustees, Neil Sugden, who has been with us since 2011… Newsletter – Summer 2025
The Spring 2025 edition of our email newsletter is available to view at the link below. CFUK Newsletter – Spring 2025 This includes: To receive future editions of our email newsletter please subscribe to our mailing… Newsletter – Spring 2025
Our chair, Will Newman, once again had the opportunity to get involved with the annual Student Voice Prize – an annual, international essay competition that raises the profile of rare diseases within the medical field, particularly with medical… Student Voice Prize 2024
Cystinosis Network Europe and Cystinosis Foundation UK were delighted to host the 2024 International Conference in Manchester, UK in July 2024!
This family conference was attended by delegates from across the globe, bringing together patients, families, clinicians, researchers, practitioners and pharmaceutical representatives. A diverse range of activities were curated into a packed three day programme, including; a scientific meeting, a range of presentations from world leading experts, live translation into seven languages, a complimentary creche facility, outings for children and young people, an adult patient get together and all topped off with a fun filled hoolie, featuring Morris dancing by known other than our charity Chair, Will Newman!
All of our record-able speaker sessions are now available to view and share. Please see our separate News post to see the list of recordings and related links.
We have had such warm and positive feedback about the whole event from a variety of people that attended. It means the world to us that people truly did feel ‘better together’ by coming along.
Our joint International Conference with CNE, held in Manchester in July 2024, was packed full of brilliant presentations by a range of contributors. We are delighted to be able to share with you a range… Watch back elements of the CNE International Conference 2024 – Better Together
We are happy to announce the results of our latest collaborative research, “The impact of different cysteamine formulations on the lives of people living with cystinosis.” This research announces important findings from a survey conducted… Research Release: The impact of cysteamine treatments on life with cystinosis
The Summer 2024 edition of our email newsletter is available to view at the link below. CFUK Newsletter – Summer 2024 This includes: – Understanding the Lived Experience of Cystinosis in the UK – Will’s… Summer 2024 Newsletter
Do you have experience of cystagon (mercaptamine), procysbi (cysteamine bitartrate), or both? Take part in our questionnaire to help decision-makers understand the impact cystinosis and its treatment has on the day-to-day quality of life of… Cystagon / Procysbi Survey
Participants are needed for the testing of a newly developed questionnaire to measure the quality of life of patients with cystinosis. The study coordinators are especially looking for parents of younger children (age 0 -7)… QUALIFY-US Study
Join us (virtually) for a Cystinosis Connect online meeting at 7.30pm on Thursday 29th February – Rare Disease Day! We’re really keen to get as many people in our community together to get your input… Cystinosis Connect – February 2024