A better life for everyone
Our highest value is promotion and protection of the human rights of people with Spina Bifida and Hydrocephalus in accordance with the UN Convention on the Rights of Persons with Disabilities.
About US
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.
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 prevalence of neural tube defects and Hydrocephalus by primary prevention;
by raising awareness, and through political advocacy, research, community building and human rights education.
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Our staff
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Board of Directors
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Youth group
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Global experts
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Volunteers
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]
As of January 2025, Jossa is responsible for general coordination and management of the IF program activities. For any questions related to IF projects or partnership, please send an email to [email protected].
Yasmina is the admin officer. If you have any administrative questions, please send an email to [email protected]
Maddalena is the policy officer who ensures that voices of persons with SBH are heard in policy-making. In case you have any questions for political advocacy, 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].
Kateryna is the project officer and oversees the development, implementation, and dissemination of multiple key projects relevant to IF’s Members. In particular youth activities. For more information, send an email to [email protected].
Founding mother of Smarter Futures https://www.smarterfutures.net/
To contact the IF International Youth Group SBH, please send an email to [email protected]
Are you interested in volunteering for IF? We look forward to hearing from you.
Send your CV and motivation letter to [email protected]
- Our staff
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Dr. Sylvia RoozenSecretary General
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]
Jossa de PanoProgram ManagerAs of January 2025, Jossa is responsible for general coordination and management of the IF program activities. For any questions related to IF projects or partnership, please send an email to [email protected].
Yasmina TouilAdmin OfficerYasmina is the admin officer. If you have any administrative questions, please send an email to [email protected]
Maddalena MaggiorePolicy OfficerMaddalena is the policy officer who ensures that voices of persons with SBH are heard in policy-making. In case you have any questions for political advocacy, send an email to [email protected].
Lila SylvitiCommunications CoordinatorAs 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].
Kateryna ShcherbynaProject OfficerKateryna is the project officer and oversees the development, implementation, and dissemination of multiple key projects relevant to IF’s Members. In particular youth activities. For more information, send an email to [email protected].
Anna Verster â€Senior Advisor on Food FortificationFounding mother of Smarter Futures https://www.smarterfutures.net/
- Board of Directors
- Youth group
- Global experts
- Volunteers
