Rett Syndrome Resources

Regional Resources

Family Voices of New York provides information and resources to families of children and youth with special health care needs (CYSHCN) and the professionals who work with them through individual information and referrals, parent matching, conferences and sharing of materials including care notebooks and resource guides.
Finger Lakes Region Parent to Parent Support Organization: A place where families of individuals with special needs, and the professionals who support them, can meet and share information.

International Rett Syndrome Foundation (IRSF): An organization that funds research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services.
WE MOVE: Worldwide Education and Awareness for Movement Disorders: A web-based source of information and resources on a variety of movement disorders, including Rett Syndrome.

Main Phone: (585) 275-0355

See our complete listing of contact numbers for NDBP services and programs.

Dr. Susan Hyman and Angela Allen, L.M.S.W. have recently been recognized for the work they do for children and their families.