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.
Rare Disease Day is February 28, 2023. Mark your calendars to share your story with WSS that can raise awareness and show your support.
Xcelerate RARE: A Rare Disease Open Science Data Challenge
March 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.