International WS Organisations

International WS Organisations

International WS Organisations

These are external links to the websites of global organisations that offer advice, information and services which may be useful to you ….

Eye Hope Foundation

WS charity based in Belgium

Association syndrome de Wolfram

French WS Support Group

The Snow Foundation

Support & Fundraising group supporting research around the world (US)

Dr. Urano’s Blog

A ‘blog’ site by Fumihiko Urano – detailing current research into WS

Worldwide Society of Wolfram Syndrome Families

A support group for families affected by WS (US)


German WS Website

The Wolf Pack Foundation

People with Wolfram Syndrome in Australia and New Zealand


The Italian Association for Wolfram Syndrome

Unravel Wolfram Syndrome

Another information site from the USA


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

Ellie White Foundation

Ellie White Foundation For Rare Genetic Disorders


Wolfram Syndrome Research Alliance

Connecting and Supporting ​Wolfram Syndrome ​Researchers and Clinicians



Although these third party organisations are shown on our website as they may provide helpful information, they are not endorsed by WSUK