Spina Bifida
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 is a place where families of individuals with special needs, and the professionals who support them, can meet and share information.
- Greater Rochester New York Spina Bifida Association non-profit organization made up of individuals with Spina Bifida, their families and other community members who work together to promote the physical, emotional and social well-being of all people with Spina Bifida.
- Spina Bifida Resource Center a specialized service that provides and facilitates access to programs available to individuals with Spina Bifida, their families and other service providers.
- Spina Bifida Association of Western New York
137 Warner Avenue, North Tonawanda, NY 14120
Email: info@sbawnt.org
Phone: (716) 446-5595
National Resources
- Association for Spina Bifida and Hydrocephalus (ASBAH)
- Children and Adults with Spina Bifida and Hydrocephalus web-based information for families on Spina Bifida, including a resource page, research blog and information on medical, surgical and educational issues.
- Family Voices is a national network that provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families and serve as a trusted resource on health care.
- Centers for Disease Control and Prevention: Folic Acid Information
- Latex Allergy Links a comprehensive, up-to-date listing of latex allergy-related sites and documents on the Internet, with links to specific information about latex allergy in individuals with Spina Bifida.
- National Institute of Neurological Disorders and Stroke
- Spina Bifida Association of America
- Spinal Cord Injury Information Network educational materials and information on services of the UAB Spinal Cord Injury Model System (UAB-SCIMS) along with links to national organizations, government agencies, commercial products and educational resources related to spinal cord injury.
Information About Learning Issues and Children with Spina Bifida
- LD Online provides web based information for families and professionals on learning disabilities and Attention Deficit Hyperactivity Disorder (ADHD).
- National Center for Learning Disabilities
- National Information Center for Children and Youth with Disabilities
- Non Verbal Learning Disability site
Books
- See the Spina Bifida Resource Center which offers print resources, including an extensive list of books for children and for parents.
Spanish Resources
Contact Us
Main Phone: (585) 275-0355
See our complete listing of contact numbers for NDBP services and programs.
Division Spotlight
Dr. Susan Hyman and Angela Allen, L.M.S.W. have recently been recognized for the work they do for children and their families.
