Each and every day, IRSA answers calls and letters from people requesting information and guidance to enable families to better care for their child with Rett syndrome. The requests come from parents, doctors, social workers, teachers, therapists, hospitals, genetic counselors, libraries and schools. Packets have been developed for each category to include the requested information.
Every new inquiry is answered promptly and materials are provided as requested.
Representatives from IRSA attend important meetings where those who care for our children attend, to give information about Rett syndrome, and to try to locate potential cases. When the medical, educational and therapeutic communities see our commitment and energy for disseminating accurate and objective information, they are greatly encouraged to join us and to further pursue research in the field of Rett syndrome. We refer all of our parents with RS to IRSA to prevent their sense of isolation as we know for sure that IRSA provides a shoulder to lean on. In addition, they have created sources of information for families, using the latest information technology making all relevant news available globally. Their books with materials required for daily care of their child, and how to obtain required services has been greatly valued by parents, especially those who are newly diagnosed.