International Federation for Spina Bifida and Hydrocephalus
Cellebroersstraat 16 B-1000
Tel: +32 (0)2 502 0413
Fax: +32 (0)2 502 1129
The International Federation for Spina Bifida and Hydrocephalus (IF) is the world-wide umbrella organization (INGO) for Spina Bifida and Hydrocephalus organizations. It was created in 1979 by national organizations of people with these impairments and their parents. Today IF's membership consists of 35 regional and national umbrella organizations for Spina Bifida and Hydrocephalus. Further, IF has an intense contact with regional and national organizations in over 50 countries, spread over five continents.
IF aims to disseminate information and expertise throughout the world to families, individuals, professionals and volunteers involved in the Hydrocephalus and Spina Bifida field.
The mission of IF is to improve the quality of life of people with Spina Bifida and Hydrocephalus throughout the world and to decrease the prevalence of Spina Bifida and Hydrocephalus by primary prevention.
In industrialized countries the coming together of parents and adults with Spina Bifida and Hydrocephalus in national organizations was a significant step towards improvement of services. These organizations have lobbied for and assisted in the establishment of better services for people and for their families who are now increasingly able to lead lives close to 'normal'.
In developing countries however, many survive, but in conditions which for the individual and its family vary from appalling to inhuman. While national organizations will specifically focus on service delivery in their own countries, IF looks across borders and facilitates the creation and strengthening of activities of national organizations in those countries where services are still poor or non-existent.
In some of these countries IF has encouraged parents and other people involved to come together and work out a strategy, which has resulted in the formation of local organizations and IF projects for early detection, treatment and rehabilitation. These projects show solidarity between the North and the South.
Spina Bifida Association of America (SBAA)
4590 McArthur Blvd., NW, Suite 250
Washington, D.C., USA 20007-4226
Fax: (202) 944-3295
The Spina Bifida Association of America's mission is to promote the prevention of spina bifida and to enhance the lives of all affected. They promote public awareness, and provide funding for research.
Spina Bifida and Hydrocephalus Association of Canada
#977-167 Lombard Avenue
Winnipeg, Manitoba, Canada
The Spina Bifida Association of Canada has a mission to improve the quality of life of all individuals with spina bifida and/or hydrocephalus and their families. They serve the parents of children with spina bifida, adults with spina bifida and professional who work with them. They have local support groups and provide a directory of these groups. Some province chapters provide parent-to-parent matching, call a group in your area for further information.
SBAC publishes a quarterly newsletter, Podium, that is included in membership dues, and have several brochures available including, "Generic on Spina Bifida," "Generic on Hydrocephalus," and "Folic Acid Supplementation." They offer a new parent packet that gives a general overview or spina bifida, and have a bibliography of books and articles. They also have a lending library for Canadians. SBAC will provide referrals to other resources and providers. The Spina Bifida Association of Canada hosts a national conference; call for further information.