When you join the Wolfram Syndrome International Registry, we will send you opportunities to take part in research studies. Also, you will receive research updates on Wolfram syndrome. Joining the registry is easy and free, and your information will remain safe and private.

Genetic testing is available for patients suspected to have Wolfram Syndrome by clinically validated next-generation gene sequencing. For those participating in the study, the costs could be covered by us.

To register or if you have any questions regarding Wolfram syndrome and genetic testing:


Fumihiko Urano, MD, PhD
Director, Wolfram Syndrome Study and Clinic at BJC
Washington University School of Medicine
Medicine, Division of Endocrinology, Metabolism & Lipid Research
MSC 8127-0021-09
St. Louis, Missouri 63110, USA

Email: urano@wustl.edu

Stacy Hurst, RN, CDE
Research Nurse Coordinator

Phone: 314-747-3294
Email: shurst@wustl.edu


MSC 8127-0021-09946​
660 S. Euclid Ave.​
St. Louis, MO 63110