In 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...
read moreIn partnership with Bromberg and Associates, cystinosis families now have access to free English/Spanish translation services. This includes, but...
read moreThe Adult Leadership Advisory Board (ALAB) created custom designed bandanas for your furry friends. Your donation provides support for...
read moreAfter four years without an in person meeting, we invite you to strap on your boots for a trip...
read moreCystinosis patients and caregivers are invited to participate in a study focused on measuring health-related quality of life (HrQoL)....
read moreMen 18+ living with nephropathic cystinosis are currently being recruited for a research study, Clinical and Molecular Assessments of...
read moreThe Cystinosis Research Network announces the expansion of our Board with two new Directors. Their experience, perspectives and dedication...
read moreSan Miguel de Allende, Mexico was the setting for Cystinosis Mexico’s training course August 26 – 28. Nephrologists, ophthalmologists...
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