cystinosis

Informational Q&A: Cystinosis QoL Study

We will host an informational session on the CRN funded study “Development of a patient-reported outcome to measure the...

In recognition of Rare Disease Day 2023, the Adult Leadership Advisory Board compiled thoughts from a few cystinosis warriors....

By Julie Ayres, mom to Sierra Sierra is approaching a rather yucky milestone—one year on peritoneal kidney dialysis. We...

Dr. Gahl is the Director of the Undiagnosed Diseases Program, a Senior Investigator in the Medical Genetics Branch and...

In partnership with Bromberg and Associates, cystinosis families now have access to free English/Spanish translation services. This includes, but...

The Adult Leadership Advisory Board (ALAB) created custom designed bandanas for your furry friends. Your donation provides support for...

After four years without an in person meeting, we invite you to strap on your boots for a trip...

Cystinosis patients and caregivers are invited to participate in a study focused on measuring health-related quality of life (HrQoL)....

Men 18+ living with nephropathic cystinosis are currently being recruited for a research study, Clinical and Molecular Assessments of...

The Cystinosis Research Network announces the expansion of our Board with two new Directors. Their experience, perspectives and dedication...