Join the WSS Data Collection Program (DCP)

Participating in the WSS Data Collection Program (DCP) is one of the most important things that WSS families can do. 

A robust database featuring WSS characteristics and other patient-reported information from our community of families and patients is valuable for clinicians, researchers, and drug developers in order to discover treatments for symptoms and other ailments of WSS. 

To accelerate the path for more research and treatment options, the WSS Foundation has partnered with RARE-X, a not-for-profit organization with expertise in curating the best surveys for drug development and clinical trials. The DCP is a centralized international registry for individuals diagnosed with Wiedemann-Steiner Syndrome and other diagnoses. Anyone can participate from our global community. 

Help us increase awareness and have the power to share your knowledge with doctors and researchers through this program — be counted today!

Tools and Resource Library:

  • Launch Webinar Materials, September 1, 2022
    The program was launched with a webinar that connected RARE-X leaders and nearly 100 WSS families from across the world on the importance of registering your loved one with WSS. Details were provided on the benefits, opportunities for researchers, and how to enroll and take surveys. Access the recording and slide materials below:
  • RARE-X Quick Start Guide

Additional resources and helpful tips will be posted soon – check back!

Still have questions? Contact Christina O’Keeffe at