Spina Bifida Links and Resources

Local resources

  • Granite State Independent Living (GSIL): A private, non-profit organization committed to equality of opportunity for all people with disabilities. Learn more about the GSIL program Teens Coping.
  • New Hampshire Family Voices (NHFV): Looking for information about your child's special health care needs or disability? Want to talk to another parent who's been there, done that? Maybe one who's still doing it? New Hampshire Family Voices is run by parents with children who have multiple disabilities or mental health conditions. NHFV has a free lending library of books, videos, audio tapes and a quarterly newsletter.
  • Parent to Parent of New Hampshire: A statewide organization that aids in helping families with children with special needs find support from other parents, health care professionals, and the communities in which they live.
  • Special Medical Services: A New Hampshire program that provides medical and financial services to children with physical disabilities, chronic illnesses, and special health care needs
  • Vermont Family Network: Empowers and supports all Vermont families of children with special needs

National resources

  • Spina Bifida Association of America (SBAA): Aims to prevent spina bifida and to enhance the lives of all affected. SBAA's efforts benefit thousands of infants, children, adults, parents, and professionals each year.
  • Spina Bifida Association of Arizona: Provides a glossary of spina bifida-related terms to help decipher what your medical team is saying. One mother of a SB child told us she spent over three hours browsing through this site.

Other resources

  • Children with Spina Bifida: A Resource Page for Parents: Includes loads of information all the way from learning issues to great tips for new parents.
  • SPINAbilities: A Young Person's Guide to Spina Bifida. Ed. by Marlene Lutkenhoff, RN, MSN, & Sonya Oppenheimer, MD