The German organization was founded by Parents in 1989. Up to now the organization is run voluntary by parents. In 2024 over 700 families with a child diagnosed with WS are Members of Bundesverband Williams-Beuren-Syndrom.
Every three years we hold a big national conference (in 2023 about 700 participants). The organization has a lot of papers to inform about the syndrome and to help people managing the disease. Our focus is on families, but we also have a wide scientific field. We are in close contact to our scientific board and help running the only competence center of WS in Germany. Within Germany we have 11 regional groups with regularly meetings. A team of 20 people contact person for different groups and regions. We are organized in different umbrella organizations to keep up with national law and social systems.
Christina Leber
Christina is mother of two adult boys and chair of the German association since 2011. Her eldest son was diagnosed when he was 3 years old. The German Williams Syndrome Association gave her a lot of help during the phase of searching for help and information. She is glad to be the FEWS representative for Germany. It is very interesting for her to see how other bigger and smaller, older and younger organizations are managing their goals and how different healthcare systems in foreign countries are. The cooperation within Europe is going better and together with FEWS a lot of international work started and information was shared and improved living with a rare disease in many different ways.
