WS Global Patient Registry

We are currently partnering with the National Organization for Rare Disorders “NORD” to implement the first-ever WS global patient owned registry, a priority in the field of rare disease.

Please help us improve patient care, strengthen our voice, and improve the chance for quicker drug development. Support The Snow Foundation’s vision of “a world without Wolfram syndrome.”

The registry should be up and running by October 2021. Sign up today to receive critical information about treatment, research, resources, and other initiatives. We will contact you once the registry is live to sign up officially. If you have any questions, please email Pat Gibilisco,