The HWSA (Hungarian Williams Syndrome Association) was established in 1999 with the participation of affected parents, an umbrella organization (Hungarian Association for Persons with Intellectual Disability) and supportive professionals. Today it counts around 250 members. Due to lack of several governmental functions – as special state education, health and social services – the HWSA aimed both to build up its own special complex programme to strengthen the autonomy of families, bringing up children with Williams syndrome (WS) and similar symptoms, and to organize “gap-filling” services. Being the only organization that deals with the special problems of WS people and their families in Hungary, we cover a wide range of activities in order not only to compensate the social disadvantages the WS people and their families have to face, but also to help families to live a full and happy life, and at the same time increasing awareness among society, professionals and decision makers.
Therefore we’ve organized complex educational and vocational programmes – on the national and international level as well – such as special development summer camps, special parent courses, and independent living programmes, all of which can serve as a pilot model both for further programmes and for new approaches on the policy level. In order to reach a wider public, we also participate in the advocacy work of HUFERDIS (Hungarian Federation of People with Rare and Congenital Diseases Network), that facilitates interprofessional and international negotiations and conferences with the inclusion of empirical experts. HWSA is a founder member of FEWS.
Dr. Gábor Pogány
Dr. Gábor Pogány holds a Ph.D. in Biochemistry with three years of research experience in the USA. He has a daughter affected with Williams Syndrome (WS). In cooperation with others, Dr. Pogány established the Hungarian Williams Syndrome Association (HWSA) in 1998 to help improve early diagnosis and provide information to patients. He initiated the foundation of the European Federation of Williams Syndrome Association (FEWS) as well as the Hungarian national alliance for rare diseases (HUFERDIS). These organisations are members of EURORDIS. Dr. Pogány represented FEWS in the EURORDIS Council of European Federations (CEF) and Hungary in the Council of National Alliances (CNA). Dr. Pogány has 20 years of professional experience, and personal commitment, in health and medical research non-governmental organisations in Hungary, Europe and the United States in the fields of cancer, genetic disorders and rare diseases. As the president of HUFERDIS, he is actively participating in European Commission funded projects and was an active player of the establishment of Hungarian National Patient Forum, resulting his election as the Coordinator of the Forum. He is involved in the development of a national plan for rare diseases in Hungary. He was an alternative patient representative of EURORDIS in the European Union Committee of Experts on Rare Diseases (EUCERD) and he is a member of Orphanet International Advisory Board.
Zsuzsanna Pogányné Bojtor, president
Zsuzsanna Bojtor holds a Chemistry – Physics teacher degree from the Eötvös Loránd University of Sciences and has more than 30 years of teaching experience. Besides that – being a mother of a young woman with Williams syndrome – she is a founding member of the Hungarian Williams Syndrome Association, in which she fills the position of the president since 1999. Zsuzsanna is an active member of the well- organized parent community the association is surrounded by, and besides the official administrative responsibilities of her function, she is involved both in the weekly developing pedagogical programmes and in the long-term projects the HWSA runs.