Join us on and leading up to May 7th to promote cystinosis awareness, education and fundraising efforts. More information...
read moreHealogix Market Research would like to hear from the cystinosis community. If you use *or have used* Cystadrops and...
read moreResearchers, clinicians, industry and advocacy representatives attending CRN Nashville have been invited to exhibit research findings, treatment breakthroughs, and...
read moreJoin us on the Raising Rare podcast featuring a young adult and caregiver living with cystinosis. The podcast episode...
read moreHello! My name is Gracie, I’m 21 years old, and I have a rare disease called cystinosis. Cystinosis is...
read moreWe will host an informational session on the CRN funded study “Development of a patient-reported outcome to measure the...
read moreIn recognition of Rare Disease Day 2023, the Adult Leadership Advisory Board compiled thoughts from a few cystinosis warriors....
read moreBy Julie Ayres, mom to Sierra Sierra is approaching a rather yucky milestone—one year on peritoneal kidney dialysis. We...
read moreDr. Gahl is the Director of the Undiagnosed Diseases Program, a Senior Investigator in the Medical Genetics Branch and...
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