Cato Lie

he International Federation for Spina Bifida and Hydrocephalus (IF) was founded by people with Spina Bifida and Hydrocephalus (SBH) and their families in 1979. Over the years, it has grown from a voluntary association into a professional disabled people’s organisation (DPO) with global coverage, democratic structure and transparent and accountable processes. The majority of IF member organisations are led and governed by adults with SBH or parents of children with SBH. Children are active participants in our members’ activities: they are involved in child-led activities, training workshops on independence and holiday camps. Nowadays, many young people with SBH have taken over the leadership of their organisations. In most cases, IF members choose close cooperation with medical and education professionals and researchers, given the importance of these professions to children and adults with SBH for their survival and development. If you are interested in joining our network of associations, organisations, institutions, companies and individuals that have an interest in Spina Bifida and/or Hydrocephalus, please check out the IF Membership Guide. MISSION AND GOALS The mission of the International Federation for Spina Bifida and Hydrocephalus is: to improve the quality of life of people with Spina Bifida and Hydrocephalus and their families,, and to reduce the incidence of neural tube defects and Hydrocephalus by primary prevention; by raising awareness, and through political advocacy, research, community building and human rights education.