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… 

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.

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… 

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)…