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
Sylvia 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. If you have any general questions on SBH, please send an email to renee.jopp@ifglobal.org
Carmen is in charge of all our communication and aims to increase the visibility of IF and of SBH. She is also the coordinator of the Youth Group. If you have any questions on how to raise awareness or to communicate effectively, please send an email to carmen.clemente@ifglobal.org
Verónica is responsible of the administration of the office and supporting the team on its daily tasks, ensuring high levels of organisational effectiveness, communication and safety. You can contact her for administration and logistical enquires at veronica.fernandez@ifglobal.
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
Martine is our expert on prevention. If you have questions about folic acid, reducing the risk of NTDs/hydrocephalus, or want to join our IF Global Prevention Initiative, please send an email to martine.austin@ifglobal.org
Anna’s area of expertise is fortification of flour with folic acid. She works for IF on our partnership for Africa, called Smarter Futures. If you have any questions on these topics, please send an email to anna.verster@ifglobal.org
Period: March 2017 – July 2017
Support in training on human rights, activities of the IF Youth Group and assisting the preparation of a workshop for IF members.
Period: September 2017 – July 2018
Support on social media and website management, video editing, creation of newsletters and liaising with members
Period: September 2018 – ongoing
Support on creating and publishing newsletters and press releases. Social media and website management, video editing.
- Our staff
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Dr. Sylvia RoozenSecretary General
Sylvia 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. If you have any general questions on SBH, please send an email to renee.jopp@ifglobal.org
Carmen ClementeCommunication CoordinatorCarmen is in charge of all our communication and aims to increase the visibility of IF and of SBH. She is also the coordinator of the Youth Group. If you have any questions on how to raise awareness or to communicate effectively, please send an email to carmen.clemente@ifglobal.org
Verónica FernandezAdministration OfficerVerónica is responsible of the administration of the office and supporting the team on its daily tasks, ensuring high levels of organisational effectiveness, communication and safety. You can contact her for administration and logistical enquires at veronica.fernandez@ifglobal.
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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
Martine AustinProgramme Manager Global PreventionMartine is our expert on prevention. If you have questions about folic acid, reducing the risk of NTDs/hydrocephalus, or want to join our IF Global Prevention Initiative, please send an email to martine.austin@ifglobal.org
Anna VersterSenior Adviser on Food Fortification and Project Coordinator, Smarter FuturesAnna’s area of expertise is fortification of flour with folic acid. She works for IF on our partnership for Africa, called Smarter Futures. If you have any questions on these topics, please send an email to anna.verster@ifglobal.org
- Board members
- Youth group
- Global experts
- Volunteers
