We encourage you to join our Facebook Forum to connect with other families while fostering new friendships and connections with the cystinosis community worldwide. The forums are designed with specific topics for asking questions and sharing solutions about living with cystinosis.
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 the Flerchinger family of Clarkston, Washington, the Grier family of Charlotte, North Carolina, the Partington family of Sacramento, California and the Sturgis family of Sandpoint, Idaho.
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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 a slow-release form of cysteamine.
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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.
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Cystinosis Research Foundation fundraising resources »