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 incidence 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 members
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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 sylvia.roozen@ifglobal.org
Renée gathers and disseminates the latest SBH related news, keeps track of scientific publications and supports IF’s communication work.
Hildur is the main liaison between IF national members and the EU institutions. She develops policy campaigns to ensure that voices of persons with SBH are heard in policy-making. For any issue on this matter, please send an email to hildur.onnudottir@ifglobal.org
Founding mother of Smarter Futures https://www.smarterfutures.net/
Sinem is the communications coordinator. If you have any questions regarding communications, including social media, please send an email to sinem.sari@ifglobal.org
Yasmina is the admin officer. If you have any administrative questions, please send an email to yasmina.touil@ifglobal.org
Thao is the project officer and coordinates several projects. If you have any questions regarding IF projects, contact Thao at thao.tran@ifglobal.org
To contact the International Youth Group SBH, please send an email to INFO@ifglobal.org
- 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 sylvia.roozen@ifglobal.org
Renée JoppInformation OfficerRenée gathers and disseminates the latest SBH related news, keeps track of scientific publications and supports IF’s communication work.
Hildur ÖnnudóttirEU Policy OfficerHildur is the main liaison between IF national members and the EU institutions. She develops policy campaigns to ensure that voices of persons with SBH are heard in policy-making. For any issue on this matter, please send an email to hildur.onnudottir@ifglobal.org
Anna Verster â€Senior Advisor on Food FortificationFounding mother of Smarter Futures https://www.smarterfutures.net/
Sinem SariCommunications CoordinatorSinem is the communications coordinator. If you have any questions regarding communications, including social media, please send an email to sinem.sari@ifglobal.org
Yasmina TouilAdmin OfficerYasmina is the admin officer. If you have any administrative questions, please send an email to yasmina.touil@ifglobal.org
Coming soonProgram Manager
Thao TranProject OfficerThao is the project officer and coordinates several projects. If you have any questions regarding IF projects, contact Thao at thao.tran@ifglobal.org
- Board members
- Youth group
- Global experts
- Volunteers
