Wolfram Syndrome International Registry

A CLIA certified lab now sequences the WFS1 gene free of charge for those patients that enroll in the Registry.

Welcome to the Wolfram syndrome website at Washington University Medical Center in St. Louis, Missouri. This website is for patients and families with Wolfram syndrome, and physicians who care for patients with Wolfram syndrome.

We offer genetic testing services and educational information about Wolfram Syndrome through this website.  We are also collecting medical records, DNA samples, and biological samples (blood and urine) from patients and their family members to identify disease-progression biomarkers and drug targets for designing therapeutic trials. To register, please send us an email (urano@dom.wustl.edu) or call at 314-362-8683.

We also plan to offer consultation services through this website. Please call 314-454-6051 to refer patients or make an appointment (Dr. Bess Marshall, Pediatrics, St. Louis Children’s Hospital). Adult patients may want to call 314-362-8683 (Dr. Fumihiko Urano, Internal Medicine). A list of physicians who see patients with Wolfram syndrome in different states can be found here (Physicians who see patients with Wolfram syndrome). These doctors are our collaborators.

Please feel free to contact us if you have any questions. Thank you for visiting this website. We are here for you.

Fumihiko Urano, MD, PhD
Samuel E. Schechter Professor of Medicine
Internal Medicine, Division of Endocrinology, Metabolism, and Lipid Research
Washington University School of Medicine
Email: urano@dom.wustl.edu
Phone: 314-362-8683