Recognition at birth and the right to health contribute to survival and access to all other human rights.
The 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.
The mission of the International Federation for Spina Bifida and Hydrocephalus is:
by raising awareness, and through political advocacy, research, community building and human rights education.
Dr. Roozen provides overall leadership and direction for the organization and she is the legal representative of IF. For any questions related to partnership or general enquires about IF, please send an email to [email protected]
Yasmina is the Admin Officer, supporting the Secretariat and managing IF memberships, finances, and administration-related inquiries. For more information, please send an email to [email protected].
As the communications coordinator, Lila oversees the IF communication activities and campaigns to raise awareness about Spina Bifida and Hydrocephalus. If you have any questions regarding communications, contact Lila at [email protected].
Yunus is a trainee whose internship focuses on projects and activities relevant to youth members. For more information, send an email to [email protected].
Margo Whiteford C.B.E., Chair
Neurosurgeon – Children’s Hospital Boston
Board of directors – Spina Bifida Association US
Scientist – Bloorview Research Institute
Professor – Center for Precision Environmental Health
Emeritus Professor
IF’s fast-growing membership now includes over 100 Spina Bifida and Hydrocephalus (SBH) associations in Africa, Australia, the Americas, Asia and Europe. Membership of IF is open to all nationally registered SBH associations that share IF’s vision and mission and actively involve people with SBH in their work. Organisations, institutions, companies and individuals with an interest in SBH and the aim to widen the extent of their activities are also welcome to apply for IF membership. Check out our Membership Guide to learn more!
All IF members are marked in blue on the map. The map also displays SBH associations that are not members of IF in orange.
If you know of an SBH association not represented below, please email us at [email protected].
During each international conference, the International Federation for Spina Bifida and Hydrocephalus (IF) presents the IF Award to an individual or organisation in recognition of their special contribution to the service of people with disabilities in general or to people with Hydrocephalus and Spina Bifida in particular.
In 2024, Prof. Dr. Rick Finnell received the IF Award of Excellence on behalf of the IF Board of Directors during the 30th International Conference on Spina Bifida and Hydrocephalus in Kuala Lumpur, Malaysia.
