Wolfram syndrome Global Registry
The snow foundation

The Snow Foundation has partnered with the
 National Organization of Rare Disorders (NORD) to implement
the Wolfram Syndrome Global Registry,
​the first worldwide WS patient owned registry, a global priority in the field of rare disease.

Please help us improve patient care, strengthen our voice, and improve the chance for more rapid drug development. Support the vision of “A world without WS.”

Register today to advance the delivery of critical information about
treatment, research, resources, and other WS initiatives.

For questions please email Pat Gibilisco, [email protected].

Wash U. Wolfram Syndrome International Registry ​and Clinical Study

Wolfram Syndrome is well-recognized as a prototype of endoplasmic reticulum (ER) disorder. Thus, our Wolfram Syndrome Center is an important component of our Center for ER Medicine. By enrolling in the Wolfram Syndrome International Registry and Clinical Study, those interested are able to receive genetic testing and educational information about Wolfram Syndrome from Washington University School of Medicine. The Registry and Clinical Study is a compilation of 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, and to create induced-pluripotent cells for designing personalized regenerative medicine. Some patients are referred to our research clinics, consultation clinics, and clinical trials. The clinical and genetic information from the study helps us gauge the progression and prognosis of the disease, identify the best outcome measures for future clinical trials, and develop novel treatments. The de-identified data sets are available worldwide for those collaborating with us. It is vitally important in getting patients enrolled to create therapeutic strategies.

Advanced genetic testing to confirm the diagnosis of Wolfram Syndrome and Wolfram spectrum disorders in a  CLIA-certified lab is free of charge for those patients enrolled in the study.

If you would like to register for the Wolfram Syndrome International Registry and Clinical Study, or have questions, please send an email to [email protected] or call 314-362-8683.

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Wash U. WS International Registry

European WS Registry
Euro-WABB Project

An EU Rare Diseases Registry for Wolfram syndrome,
​Alström syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes.

European WS Registry