RAZEM DLA SYNGAP1 – Together for SYNGAP1
The Polish Association „Together for Syngap 1” was founded in June 2023. The formal registration is still in process. In Poland we have 31 families with Syngap child and all families declared to join the Association. The President of the Association is Urszula Tybor and Aneta Kosior-Dawid is the formal Representative. The aims of the Association are:
- Supporting children suffering from Syngap 1 as well other rare diseases and their families, providing help in life matters and organizing mutual assistance in striving for normal functioning of these children and people in society
- Cooperation with the main and local authorities and state administration, health care facilities, etc. domestic and foreign
- Organizing member self-help aimed at uniting the environment of families with children and people suffering from Syngap 1 and rare diseases
- Promoting knowledge about Syngap 1 and rare disease, problems of children and people affected by Syngap 1 and rare disease in the society
