Current Research and Resources

Doctors currently researching Wiedemann-Steiner Syndrome

Dr. Hans Bjornsson of John Hopkins Medicine
Director of the Epigenetic and Chromatin Clinic and Assistant Professor of Pediatrics

Dr. Wendy Jones of Great Ormond Street Hospital for Children
Clinical Genetics Team

Social Media Networking Groups

Facebook: Wiedemann-Steiner Mommies and Daddies 

This forum is solely for the fulltime parents/guardians of those diagnosed with Wiedemann-Steiner Syndrome. Because there is so little information available for parents/guardians, this is a great place to ask questions, gather advice, and gain support.

Facebook: Wiedemann-Steiner Family and Friends 

This forum is for family, friends, caregivers, teachers, and therapists to learn more about WSS and how they can support those affected by WSS. There are a few adults with WSS that are part of this group as well.

*Both Facebook groups are closed groups. Submit a request for approval and you’ll receive a private message from the group administrators.