Description
Parents of girls with Rett Syndrome often are incapable to vindicate their rights. Civil organizations focusing on patients often don’t reach out to these families. The project aims to care for these families within local communities, offering informational services. The program aims to make the existing infrastructure more effective by focusing on families as a starting point, from the bottom-up, involving its own funds. In 80% of the cases, the families live in suburban areas and are visited by professionals, who cooperate with local professionals through continuous consultation and documentation. A supportive basis of suburban volunteers needs to be built, that will aid communication between these families and the foundation. As a result of the program the families’ quality of life may improve, thanks to the services and cooperation providing professional patient care, and organizing adequate development.
Summary of project results
The aim of the „CSEPP” program was to provide services focusing on support, therapy and information to the parents of girls with Rett Syndrome within their local communities. We achieved our primary goals. The project has mobilized tremendous amount of human resources and it has been provided personalized support for families who raise children with Rett Syndrome. We held 310 consultations, a presentation with 350 attendants, trained mentor-parents and published and online article. The involved families could joint actively to the program anytime. All service, program and presentation were accessible for free for them. The main achievement of this program was the development and execution of a model which could be applicable for any organization for rare diseases. The sustainability of the project is mainly depends on the available resources. Our main goal now is to find potential supporters or grants which could provide the necessary financial background for the program.
Summary of bilateral results