Join the WSS Data Collection Program (DCP)

Participating in the WSS Data Collection Program (DCP) is one of the most important things 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 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 in our global community

The WSS Data Collection Program will be patient-owned (meaning you own your data) but enabled by RARE-X technology. All data governance, consent support, and data security are put in place by RARE-X. Patients and families with WSS will benefit from a streamlined approach, and since RARE-X is a nonprofit, there is no cost to you, researchers, or the WSS community. 

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


  • Data Report, November 2023 – (PowerPoint document) or (PDF document)

    This report features the data results of 178 individuals enrolled in the program, surveys completed as of November 20, 2023, and characteristics of living with WSS. 

  • Data Report, October 2022

    This report features the data results as of October 25, 2022, of 96 individuals enrolled in the program after seven weeks from the program launch on September 1, 2022. Data on symptoms reflect those of the total enrolled who completed surveys on those specific characteristics. As more surveys are completed, the data findings will be updated.  

Tools and Resource Library:

  • Xcelerate RARE 
    The WSS Foundation participated in the Xcelerate RARE: A Rare Disease Open Science Data Challenge, which brings together researchers and data scientists in a collaborative environment to make the best use of WSS patient-provided data. Patients with WSS are encouraged to enroll and update their surveys with new information each year. 

    RARE-X announced results in October 2023 at their Global Genes Summit, and one awarded proposal included research on WSS data. More updates will be shared as progress is made using this data. 

  • Launch Webinar Materials, September 1, 2022
    The program was launched with a webinar that connected RARE-X leaders and nearly 100 WSS families worldwide on the importance of registering your loved one with WSS. Details on the benefits, research opportunities, and how to enroll and take surveys were provided. 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