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
Dr. Mira Jakovcevski of Max Plack Institute of Psychiatry:
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.