- American Academy for Cerebral Palsy and Developmental Medicine - Scientific society devoted to the study of cerebral palsy and other childhood onset disabilities including spina bifida, neuromuscular disease, traumatic brain injury, genetic disorders, communications problems, and learning disabilities.
- International Federation for Hydrocephalus & Spina Bifida - IF is is a world-wide umbrella organiation. Its members and contacts are organizations for Spina Bifida and Hydrocephalus in more than 40 countries, making a unique network of experience and knowledge.
- Spina Bifida and Hydrocephalus Association of Canada - Works on behalf of people with spina bifida and/or hydrocephalus and their families. The Association's purpose is to make life better for those born with spina bifida and/or hydrocephalus and for those not yet born.
- Spina Bifida and Hydrocephalus Association of Ontario - Helps those with spina bifida and/or hydrocephalus and their families deal with the challenges brought on by these conditions. Provides a range of services for parents, families, youth and adults.