Neurodevelopmental and Behavioral Pediatrics

Spina Bifida - Resources

Local Resources and Organizations

  • SportsNet, this is part of Rochester Rehab and offers sports programs for youth and adult including the Rochester Rookies track and field team 
  • 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.
  • Spina Bifida Associaton of Western New York
    Serving individuals, families, and caregivers of people effected by Spina Bifida, for more information visit their Facebook
  • Brain Injury Association of New York State
    BIANYS has created Project LEARNet. Although this information was developed for people that have sustained a Traumatic Brain Injury (TBI) the information about learning issues is often the same for people that have spina bifida and shunted hydrocephalus.  This is a very interactive web site for parents, children/teens and professionals to help understand the learning needs and accommodations that are helpful.

General Information

Information About Learning Issues and Children With Spina Bifida

Family Advocacy

  • My Child Without Limits
    My Child Without Limits provides resources for families of young children ages 0-5 with developmental delays or disabilities, including spina bifida. The site also has information about government programs that may be accessed, educational recommendations including assistive technology and complementary and alternative therapies.

Management of Common Health Conditions

Spina Bifida Prevention and Genetics

Connect with Golisano Children's Hospital

Golisano Children's Hospital Development

Contact Us

Main Phone: (585) 275-0355

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

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