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
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/
Vacant see also https://www.ifglobal.org/news/vacancy_communications/
Yasmina is the admin officer. If you have any administrative questions, please send an email to yasmina.touil@ifglobal.org
Shantal is the project officer and coordinates several projects. If you have any questions regarding IF projects, contact Shantal at shantal.martis@ifglobal.org
Nahal has a supportive role to several projects of the IF Team.
Claire supports IF with several policy tasks for the year 2023. If you have any questions regarding the IF policy developments, contact us at info@ifglobal.org
To contact the IF International Youth Group SBH, please send an email to INFO@ifglobal.org
Are you interested in volunteering for IF? We look forward to hearing from you.
Send your CV and motivation letter to recruitment@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
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/
IF is looking for you!Communications CoordinatorVacant see also https://www.ifglobal.org/news/vacancy_communications/
Yasmina TouilAdmin OfficerYasmina is the admin officer. If you have any administrative questions, please send an email to yasmina.touil@ifglobal.org
Shantal MartisProject OfficerShantal is the project officer and coordinates several projects. If you have any questions regarding IF projects, contact Shantal at shantal.martis@ifglobal.org
Nahal MoghaddamProject OfficerNahal has a supportive role to several projects of the IF Team.
Claire CambierPolicy OfficerClaire supports IF with several policy tasks for the year 2023. If you have any questions regarding the IF policy developments, contact us at info@ifglobal.org
- Board members
- Youth group
- Global experts
- Volunteers
