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 annual collaborative event between patient organizations and researchers.

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!

Share Your Data to Advance WSS Research

Enroll in the WSS Data Collection Program managed by RARE-X and the WSS Foundation.

Access the new Data Report, November 2023

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:

2024 WSS Foundation International Family Conference:
November 7-9, 2024 in Denver, Colorado USA

The WSS Foundation team is hard at work finalizing details for our next conference, which brings together the largest gathering of WSS patients and families as well as medical researchers featuring the latest findings on treatments and care. 

WSS Data Collection Program

The patient-reported data of you or your loved one will help WSS acheive more significant research opportunities to increase knowledge. Enroll in the WSS Data Collection Program today to share your lived experience. Access the latest data reports on common symptoms, development milestones, and other shared characteristics of WSS.