|Project title||Patron Program Providing For Rett Syndrome Families|
|Thematic area||Provision of welfare and basic service to vulnerable groups|
|Name of the organization||Hungarian Rett Syndrome Foundation|
|Postal address||1116 Budapest, Sáfrány utca 42 fszt 7/A|
|Project manager||Edinger Katalin|
|Project timeframe||October 1st, 2014 - April 30th, 2016|
|Amount of support||14,940 €|
Rett syndrome is a genetic disease that causes complex functional problems in the central nervous system. Its cause is a malfunctioning gene on the X chromosome, that manifests only in girls. Due to the abnormal development of the central nervous system the children need constant care, attention and help. The aim of the project is to maintain and improve the physical and mental state of the girls and to provide therapeutic and informational services, mental hygienic help for the parents and to improve their interest representation skills. The project is organised from the bottom-up, it tries to improve the efficiency of the cooperation between the specialized care system and the volunteer helpers from the side of the families. The goal is to establish a sustainable network that helps the communication of all the stakeholders (patients, their family members, experts, helpers), therefore improves the access to the services, presently meeting geographical obstacles. Trainings and development plans will be provided for experts who help the families locally.