Building a competence center for Wiliams Syndrome at The Hochschule Zittau/Görlitz – current research, teaching and Third Mission

Abstract

Williams Syndrome (WS) is a rare neurodevelopmental disorder based on a gene loss on chromosome 7, which occurs in 1 of 7,500 live births. The WS phenotype is typically associated with moderate mental disability, cardiac problems, hyper social behavior, anxieties, and a need for lifelong support. Current research focuses mainly on clinical characteristics, thus providing important implications for medical management. Parents, therapists and professional caregivers are able to find very few usable implications for everyday-life challenges though. The authors aim to raise research questions and help to bridge this gap in the long term. Therefore they are engaged in building a competence center for WS at the University of Applied Sciences Zittau/Görlitz (HSZG). This article outlines the starting point and main idea, as well as completed, ongoing and planned scientific and supportive activities.