Our growing success is due to the outreaching of love and support from cystinosis families around the country, supporting each other in our mutual effort to cure cystinosis. We have formed partnerships with cystinosis families around the globe who are dedicated and committed to funding research to find better treatments and a cure for cystinosis.
More about our foundation partners
Over the past few years there have been new research developments and significant advancements in the treatment of cystinosis. Dr. Ranjan Dohil’s research study funded by CRF at the University of California, San Diego (UCSD) has resulted in the development of the slow-release form of cysteamine, Procysbi™.
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Meet Our Community
Although managing cystinosis is a constant challenge for Natalie and all those with this disease she is determined to live life to the fullest. It is her hope and her genuine love of life that gives us strength. She is our daily reminder of how precious life is.
Learn about the CRF community
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Cystinosis Research Foundation fundraising resources
This resource list has been compiled by the Cystinosis Research Foundation for cystinosis patients and their families as a quick reference to assist you with your questions concerning insurance, and the process necessary to obtain medications and prescriptions. This information is intended for general education and should not be construed as advising on diagnosis or treatment of this or any other medical condition.