English Summary

The Slovak Prader –Willi Syndrome Association (SPWSA) was founded in September 2006 thanks to support of the pharmaceutical company Pfizer. Our main objective is to bring together families with children and young adults 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. Our organization is also a patient organization of the Slovak Alliance for Rare Diseases. 

The Slovak Prader –Willi Syndrome Association currently has 23 member families. These are all families who have a child affected with PWS. The youngest children are 5 years old and the oldest one is 29. Most of the children receive the growth hormone treatment, which in Slovakia is indicated and covered by the insurance company. However, young adults 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 organize meetings of the member families on a regular basis (twice a year), with the participation of professionals who present to us the latest techniques and news in PWS management. 

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