
Progress Report – Advancing the Understanding of Renal Fanconi Syndrome in Cystinosis
One very important area of cystinosis research is understanding renal Fanconi syndrome in cystinosis. Dr. Stéphanie Cherqui is working on unraveling the molecular mechanism of Fanconi syndrome

Join CRF on Rare Disease Day February 28, 2025 and Celebrate Our Research Progress!
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,

Clinical Trial Now Recruiting Nephropathic Cystinosis and Distal Myopathy Patients!
Reza Seyedsadjadi, MD Assistant Professor of Neurology Harvard Medical School Dr. Reza Seyedsadjadi is looking for participants to volunteer for an interventional study to characterize

Final Research Report Olivier Devuyst, MD, PhD, Principal Investigator, and Marine Berquez, PhD, Co-Principal Investigator
Final Research Grant Report Olivier Devuyst, MD, PhD, Principal Investigator, and Marine Berquez, PhD, Co-Principal Investigator, University of Zurich, Switzerland Role of Nutrient Sensing and
Novartis Statement to the Cystinosis Community
October 24, 2024 Dear Cystinosis Community, We hope that you are enjoying the fall. The Novartis teams have been hard at work collaborating with the

Join Dr. Donny Suh live on November 5, 2024 with conversation and information on ocular cystinosis!
For those of you who attended the Day of Hope this year, we introduced you to Dr. Donny Suh from UC Irvine. He is an