Cure Cystinosis International Registry

The Cystinosis Research Foundation in collaboration with the Cystinosis Foundation UK and other key Cystinosis leaders and organisations around the world have launched a patient-based international Cystinosis registry.

Cure Cystinosis International Registry

The Cure Cystinosis International Registry ( will provide an opportunity for those with Cystinosis to be involved in research that will help develop and test new therapies and develop a cure for Cystinosis. The registry resource will connect the stakeholders in the Cystinosis community – the scientists, researchers, clinicians, pharmaceutical companies, patients and families – and provide them with resources that have never been available in one place before. The Cure Cystinosis International Registry is dedicated to improving the lives of those affected by Cystinosis and to finding a cure for Cystinosis.

The Cystinosis Foundation UK is a supporter of the registry and we encourage all those with Cystinosis in the UK to register to help improve the quality of information in the database, which will aid researchers and professionals in their work.

The information provided on the Cure Cystinosis International Registry has been developed with direction and advice from the Cure Cystinosis International Registry Medical and Scientific Council, a group of experts in Cystinosis, and the Cure Cystinosis International Registry Advisory Board.

All the information in the registry can only be accessed by approved professionals who cannot see which individuals have provided their data.

Comments are closed.

Novartis Gene Therapy Update We have received this message from Novartis regarding their gene therapy program for [...] Read more...
CNE International Conference 2024 Cystinosis Network Europe and Cystinosis Foundation UK are delighted to announce the 2024 [...] Read more...
Cystinosis Comic Book Series by Artist Kevin McCalla The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who [...] Read more...
Summer 2023 Newsletter The Summer 2023 edition of our email newsletter is available to view at the link below. CFUK [...] Read more...
All website content copyright Cystinosis Foundation UK (Charity No.1074885) 1997-2013, except where explicitly stated.
Data Protection Act Registration Number: Z9880997. Please refer to our terms and conditions and our privacy policy.