English Summary

The Slovak Prader –Willi Syndrome Association (SPWSA) was found in September 2006 thanks to support of the pharmaceutical company Pfizer. Our main objective is to bring together families with children who have PWS, organize meetings, share knowledge and information and thus make life easier for both the families and children. We publish information on our web site, print information leaflets and cooperate with other national PWS organizations, especially Czech national association with which we also plan some activities in the future. In October 2006 SPWSA became a regular member of the international organization IPWSO.

The Slovak Prader –Willi Syndrome Association currently has 16 member families. These are all families who have a child affected with PWS. The youngest child is 18 months old and the oldest one is 20. Most of the younger children receive the growth hormone treatment, which in Slovakia is indicated and covered by the insurance company. However, the older children and adolescents receive no treatment. Therefore, it is our focus to spread the information about the syndrome, possibilities of its early diagnosis and treatment around the pediatricians, pedagogical staff, occupational therapists, other professional staff and also general population.

We plan to organize meetings of the member families on a regular basis (twice a year), with the participation of professionals who will present to us the latest techniques and news in PWS management. So far, we have held two weekend meetings. The second one was held in April 2007 and we had the pleasure to welcome there Mrs. Pam Eisen – the President of IPWSO and Mr. Giorgio Fornasier – Director of Program Development. They presented to us activities of the international Prader-Willi Syndrome Organization, explained some possibilities of the behavior management, showed photos from different meetings around the world and told some interesting stories of families and their struggle with PWS. Photos are available in the section Photo gallery. The next meeting is scheduled for October 2007.

In the long - term perspective SPWSA plans to establish a group home or sheltered workshop for children with PWS and other disabled children, where they could live more independent life under the supervision of skilled professional staff.