Spina Bifida

Last updated: March 2, 2015

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  • Children with Spina Bifida a resource guide for parents The Children and Adults with Spina Bifida website has been around since 1996. It is associated with SB-List, the first Internet Discussion list for parents of children with spina bifida. In particular, the focus of this site and SB-List is myelomeningocele, the most severe form of spina bifida.
  • International Federation for Hydrocephalus & Spina Bifida The International Federation for Spina Bifida and Hydrocephalus (IF) is the worldwide umbrella organisation (INGO) for Spina Bifida and Hydrocephalus organisations. It was created in 1979 by national organisations of people with these impairments and their parents. Today IF's members consist of 50 regional and national umbrella organisations for Spina Bifida and Hydrocephalus. Furthermore, IF has intensive contact with regional and national organisations in over 50 countries, spread over five continents. IF's activities are focused on the dissemination of information and expertise throughout the world to families, individuals, professionals and volunteers involved in the field of Hydrocephalus and Spina Bifida.
  • Spina Bifida Association of America serves adults and children who live with the challenges of Spina Bifida. Since 1973, SBA has been the only national voluntary health agency solely dedicated to enhancing the lives of those with Spina Bifida and those whose lives are touched by this challenging birth defect. Its tools are education, advocacy, research, and service.
  • Spina Bifida and Hydrocephalus Association of Canada
  • Spina bifida • Hydrocephalus • Information • Networking • Equality (Shine) As of the 20th October 2011, Spina bifida • Hydrocephalus • Information • Networking • Equality – Shine, became the new name for the Association for Spina Bifida and Hydrocephalus (ASBAH). Shine is a registered charity, which was formed in 1966, initially to help families and individuals affected by spina bifida and hydrocephalus. Today, Shine is a community of 75,000 individuals, families, friends, and professionals, sharing achievements, challenges and information on living with hydrocephalus, or spina bifida, and related issues. Working together throughout England, Wales and Northern Ireland, we strive to overcome challenges and achieve the best for you and your family.
  • Spina Bifida Fact Sheet from the National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH).
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