Sign Up for the International Registry

If you or a family member has Wolfram syndrome and Ashkenazi Jewish heritage, your participation could help move research forward. 

Washington University in St. Louis’ internationally recognized team is actively seeking new patients to join their clinical care and research efforts. Signing up for the Wolfram International Registry is the first step.

Why more patients are needed

The team at Washington University School of Medicine in St. Louis is leading research into the Ashkenazi Jewish variant of Wolfram syndrome, which is caused by a specific mutation in the WFS1 gene. Their goal is to better understand how this variant progresses, and to develop treatments that address its unique biology. But to do that, they need to connect with more individuals and families who carry this mutation.

By finding more patients, researchers can collect the data and samples they need to design studies, launch clinical trials, and develop therapies targeted to this genetic form of the disease.

A welcoming clinic with global reach

Patients who register with the Wolfram Clinic at Washington University receive access to expert care, including genetic counseling, personalized treatment plans, and opportunities to participate in clinical research. The clinic has welcomed patients from across the U.S. and around the world, offering both medical support and a chance to contribute to breakthrough science.

How to get involved

Joining the Wolfram International Registry is easy and free. By registering, you’ll receive updates about new research and clinical trials, and you’ll help the research team identify potential candidates for studies focused specifically on the Ashkenazi Jewish form of Wolfram syndrome.

Whether you’re newly diagnosed or have been living with Wolfram syndrome for years, your experience can help shape the future of care. Every new connection brings researchers closer to answers, and every participant brings us one step closer to a cure.

Learn more about the clinic and care plans — by signing up for the international registry — here.