CYSTINOSIS SUPPORT NETWORK EUROPE

Cystinosis Support Network Europe (CNE)

Cystinosis Support Network Europe is a registered charity that unites patient‑support, advocacy and research organisations across Europe and beyond. Established to offer informal peer support and to host a biennial family and research conference, CNE now plays a leading role in liaising with scientists, clinicians and the healthcare industry developing therapies for cystinosis.

The network provides a range of resources for patients, families, clinicians and researchers, and operates a Community Advisory Board – based on EURORDIS EuroCAB principles – to ensure that patients are consulted as investigators in treatment development.

CNE’s activities include organising the international cystinosis conference (most recently in Manchester, UK, 2024, with the 2026 edition to be hosted in Ireland), facilitating collaboration among member organisations, and advocating for improved care and eventual cures.

The charity serves anyone affected by cystinosis – children, young adults and their families – as well as healthcare professionals and research teams working to advance treatment for this rare, genetic disease.