Phelan-McDermid Society
The Phelan-McDermid-Gesellschaft e.V. (Germany – Austria – Switzerland) supports the initiative to found a neuropaediatric centre of excellence in Austria. We see that young patients with neurological conditions such as Phelan-McDermid syndrome (PMS) cannot find a point of contact with expertise in Austria.
Yet these patients in particular benefit from early and continuous support: only this way can those affected gain as much self-determination as possible in their lives, and secondary conditions could be avoided. This, however, requires expertise on this rare condition to be pooled in one place, where affected children and adolescents are treated and supported in a targeted way. For our Austrian families affected by PMS, we finally want a place where the European guidelines for treating the syndrome are known and implemented. Where parents can be parents and know their children are in the best hands.
Board of the Phelan-McDermid-Gesellschaft e.V.