The New WSS Data Collection Program Launched September 1

Enroll and share data to increase the knowledge and advance new research on WSS.

Be Counted & Enroll Today!

Participate in the International WSS Family Conference

Join the largest gathering of WSS families & researchers. 

Learn More & Register Today!

What separates WSS patients from treatment? Research.

Treatments are within reach given adequate funding for research; be a part of the future.


Our Mission:

The Wiedemann-Steiner Syndrome Foundation provides education, fosters community, and stimulates research to improve the lives of everyone impacted by WSS.

Upcoming Events:

Join us for the launch of the new WSS Data Collection Program, powered by RARE-X, on September 1. Be counted and use the power of your data to make a difference. 

September 15th is International WSS Awareness Day (#WSSday). This day is set aside to help promote awareness in the public and professional communities.

International WSS Family Conference:

October 27 – 29, 2022
Baltimore, Maryland USA

Join the WSS Foundation and a gathering of the largest number of WSS patients and their families for 2.5 days of education, research engagement, networking sessions and fun activities featuring medical professionals, therapists, education advocates and many more!