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

The WSS Data Collection Program will be patient-owned (meaning, you own your data) but enabled by RARE-X technology. All data goverance, 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, October 25, 2022
    This report features the data results as of October 25, 2022 of 96 individuals enrolled in program after seven weeks from program launch on September 1, 2022. Data on symptoms reflect those of the total enrolled who completed surveys on that specific characterisitics.

    As more surveys are completed, then data findings will be updated.  

Tools and Resource Library:

  • Xcelerate RARE – COMING IN MAY 2023
    The WSS Foundation is participating in the Xcelerate RARE: A Rare Disease Open Science Data Challenge, planned in May 2023.

    Xcelerate RARE is bringing together researchers and data scientists in a collaborative and competitive environmenta to make the best use of WSS patient-provided data. Grant funds are available for communities with the greatest participation. Enroll in the WSS Data Collection Program and share your lived experiences with WSS.

    There are key dates to ensure your data is counted: 
    Today – Enroll in WSS Data Collection Program
    February 28, 2023 – upload your genetic report (contact us if you need help)
    March 30, 2023 – all data is locked for Xcelerate RARE. Make sure to complete your surveys by this date. 

  • 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