January 2025

Our community might be small in numbers, but our determination to cure cystinosis is unstoppable! We have more work to do, and with your help, we will find better treatments and a cure for cystinosis. Although we are rare, we dare to do the remarkable. Approximately 7,000 rare diseases affect over 30 million people in […]

Dr. Reza Seyedsadjadi is looking for participants to volunteer for an interventional study to characterize the mechanism of muscular involvement in swallowing in patients with cystinosis who are experiencing myopathy. If you are between the ages of 16 years old and 70 years old, if you have nephropathic cystinosis and distal myopathy, and meet the