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.
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. If you have any administrative questions, please send an email to [email protected]
As the Members Engagement and Communications Officer, Laura coordinates all communications towards IF members and partners. If you have any questions regarding communications, contact Laura at [email protected]
Kateryna is our trainee who focusses her work on communications and youth empowerment. For more information, contact the IF team at [email protected].
As per August 2024, Dominik is the policy officer and ensures that voices of persons with Spina Bifida and or Hydrocephalus are heard in policy-making. If you have any questions regarding human rights advocacy or policy-making, contact Dominik at [email protected]
Coming Soon
Are you a passionate multitasker who wants to actively contribute to the success of several international
programs within a multicultural working environment? Send us your CV and Motivation Letter at [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]
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
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
-
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]
Yasmina TouilAdmin OfficerYasmina is the admin officer. If you have any administrative questions, please send an email to [email protected]
Laura De La RosaMembers Engagement and Communications OfficerAs the Members Engagement and Communications Officer, Laura coordinates all communications towards IF members and partners. If you have any questions regarding communications, contact Laura at [email protected]
Kateryna ShcherbynaTraineeKateryna is our trainee who focusses her work on communications and youth empowerment. For more information, contact the IF team at [email protected].
Dominik DrdulPolicy OfficerAs per August 2024, Dominik is the policy officer and ensures that voices of persons with Spina Bifida and or Hydrocephalus are heard in policy-making. If you have any questions regarding human rights advocacy or policy-making, contact Dominik at [email protected]
Coming SoonProject Officer (part-time / full-time)Coming Soon
Vacant PositionProgram Manager (part-time / full-time)Are you a passionate multitasker who wants to actively contribute to the success of several international
programs within a multicultural working environment? Send us your CV and Motivation Letter at [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