Experiences of a Hungarian NGO from an EU project Executive President: Pogányné Bojtor Zsuzsanna, Supported by the European Union MWSzT Prominent Charity Organization H-1095 Budapest, Viola u. 19., Hungary, Mailing address: H-1022 Budapest, Pajzs u. 5., Hugary tel: (36-1) Hungarian Tax Number: IBAN: HU

Mission Statement To help all individuals with Williams syndrome and those with similar characteristics to reach their full potential. To reach out to individuals with Williams syndrome characteristics and provide support and information regarding the syndrome. To organize „gap-filling” services, conferences, and camps for developing skills. To increase awareness and understanding of Williams syndrome by disseminating timely and accurate information to families and professionals. To support research into all facets of the syndrome, and the development of educational materials regarding Williams syndrome. To work with other support groups around the world, with the medical and educational community at large and with similar non-profit organizations across Hungary. The Association works as a non-profit, tax-exempt corporation. It derives support primarily from grant applications, private donations and fund- raising projects.

Supports the realization: Supported by the European Union The Phare Access Social Micro Project Programme of the European Union, No.: with the cofinancing of the Hungarian Republic Title: Complex Programme to Foster the Social Inclusion of People with Williams Syndrome (acronym: FIPEWS) Two main directions: To support social and healthcare activities and services targeting social reintegration To strengthen the operational independence and capacity of the supported NGO.

Goals and results 1. To strengthen the autonomy of families bringing up children with Williams syndrome (WS) and similar symptoms, organizing „gap- filling” services. We want to introduce and broaden our educational and vocational programmes, improving the habilitation - rehabilitation of these people with accumulated disabilities, to our members who live scattered in the country. For these: 1.Health protection, habilitation, developing skills to avoid social marginalization. These development programmes, including hydrotherapeutic and rehabilitation gymnastics (HRG) and sensomotor training TSMT), special educational and occupational therapy, music, drama and art therapy, special language and music teaching, are based on claims of the families and experts and on the special characteristics of WS. 2.Enhancement of community and our NGO. The project also provided possibility for this vulnerable group to increase their partnership to compensate their social disadvantages by learning and exchanging experiences. All of these could help to lead to a life without having to rely on others, while actively participating also in social life. Therefore, we organized different kind of meetings, and maintained our internet communication service.

3.Increasing awareness, disseminating information. We continued our activities: Translate new information Maintaining and developing our internet home page Publishing the Hungarian version of the new American WS Parent Handbook (Fulfilling Dreams - A handbook for parents of children with Williams syndrome By Barbara Scheiber) Distribute publications Special Parent Course in autumn 4.Developing trans-national partnerships, participate in European civil networks. We participated in the work of the next international organizations: Federation of European Williams Syndrome Associations (FEWS) - eg: maintaining the official home page European Organization for Rare Disorders (EURORDIS) – participating in a pan-European survey 5.Supporting scientific and research activity. Cooperation with Medical Institutes Cooperation with research institutes on the area of psychology, pedagogy, and cognitive science. Goals and results 2.

6.Organization of recreation and leisure programmes. Organization of useful and entertaining programmes in the summer camp And during the year T he parents will be able to advance a higher quality of life for their children, getting closer to equal opportunities, as a final result of our project. Goals and results 3.

Sustainability Follow-up The complex training programmes will improve the general condition of participants and together with the disseminated information they will significantly enhance the abilities and capacities of the children and their families resulting a substantial impact on our target groups. The distributed information about our experiences and methods using video films made during the trainings will result multiplier effects on similar organizations dealing with handicapped groups. Our voluntary helper university students (special teachers, psychologists, and medical students) will have also much more information about Williams syndrome. Financing after the EU funding ends - Our grant applications will be also easier after a successful realization of a relative larger EC grant, and use it as reference.