WSS Foundation Progress Report

Check out our latest WSS Foundation Progress Report to see how we are improving the lives of everyone impacted by WSS. 

Read Our Progress Report


At the WSS Foundation, we use the power of our global community to improve the lives of those impacted by WSS through greater knowledge of lived experiences, strategic partnerships, and groundbreaking research. 

Your Donation Makes a Difference

Help us accelerate discoveries on WSS during this collaborative event between patient organizations and researchers in May 2023.

Your patient-provided data in the WSS Data Collection Program is the key for WSS to be seen. The communities with the greatest participation of enrolled patients have better opportunities!

Help WSS & Enroll Today!

The New WSS Data Collection Program Launched September 1

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

Access the new Data Report, October 25, 2022

Be Counted & Enroll 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:

Participate in the new WSS Data Collection Program, powered by RARE-X. Be counted and use the power of your data to make a difference. 

7th Annual WSS Foundation Kids Quadthralon – May 7, 2023. Participate in-person in Sacramento, CA or virtually on your own. 

Xcelerate RARE: A Rare Disease Open Science Data Challenge

May 2023

The WSS Foundation is participating in this collaborative event that brings together researchers with patient organizations to make the best use of patient-reported data. The key is your patient-reported data will help WSS acheive greater opportunities to increase knowledge and access grant funds. Enroll in the WSS Data Collection Program today to share your lived experience.