The Wiedemann Steiner Parents Network has developed over the past few years as parents of Wiedemann Steiner children, as well as adults with Wiedemann Steiner Syndrome, have reached out to each other via the Internet.
As of July 2016, there are approximately 45 families in the network as well as a few Wiedemann Steiner adults. Locations of those with the Syndrome include the United States, Canada, England, Japan, Northern Ireland, Iceland, Norway, and more.
Active discussion of the Syndrome, symptoms, treatments, and therapies is occurring via email and on Facebook.
If and only if you are a Wiedemann Steiner Syndrome parent or an adult with Wiedemann Steiner Syndrome, email us and we will invite you to our discussions. For those who are not on Facebook, or who are on Facebook but would prefer not to engage in medically sensitive discussions online, email us and we can connect to you via email or telephone.
One goal, of course, is to advocate for those with the syndrome. This includes supporting those performing research on Wiedemann Steiner Syndrome. We host a page noting some of those researching WSS, who we can assist by supporting their research as well as by offering subjects for Wiedemann Steiner Syndrome research.
We have also begun fundraising efforts to directly benefit WSS patients. This includes a campaign at GoFundMe that assisted a few families traveling to the first Wiedemann Steiner Syndrome clinic, held at Johns Hopkins University in June 2015.v