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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.

Recognition at birth and the right to health contribute to survival and access to all other human rights.

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.

  • Our staff
  • Board members
  • Youth group
  • Global experts
  • Volunteers
Dr. Sylvia Roozen
Secretary 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 Jopp
Information Officer

RenĂ©e gathers and disseminates the latest SBH related news, keeps track of scientific publications and supports IF’s communication work.

Hildur Ă–nnudĂłttir
EU Policy Officer

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

Anna Verster †
Senior Advisor on Food Fortification

Founding mother of Smarter Futures https://www.smarterfutures.net/

Selma Cela
Project Manager

Selma is the project manager and coordinates several projects. If you have any questions regarding one of IF’s project, please send an email to selma.cela@ifglobal.org

Sinem Sari
Communications Coordinator

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 Touil
Admin Officer

Yasmina is the admin officer. If you have any administrative questions, please send an email to yasmina.touil@ifglobal.org

Mr. Cato Lie
President, Norway
Dr. Papatya Alkan Genca
Turkey
Mrs. Emma Suardiaz
Spain
Mrs. Giulia Bizzotto
Italy
Dr. Aziza Mustafa Elnaeema
Sudan
Mr. Rasmus Isaksson
Sweden
Dr. František Horn
Slovakia
Mrs. Sonia Uribe
Colombia
Dr. Victoria Sandoval
Guatemala
Mirela Bukovac
Croatia
Marcus Ward
Ireland
Elisa Garcia de Ceca
Spain
Cillian Dunne
Ireland
Patrícia Albertová
Slovakia
Parth Hendre
India
Rereloluwa Adeolu
Nigeria
Saad Mouhdi
Morocco
Rebecca Austin
Australia
Opeyemi Folorunsho Samuel
Nigeria

 

 

To contact the International Youth Group, please send an email to selma.cela@ifglobal.org

Margo Whiteford
Chair

Margo Whiteford C.B.E., Chair

BIO

Benjamin Warf
Services and Care

Neurosurgeon – Children’s Hospital Boston

BIO

David Nolan Morrissey
Human Rights

Board of directors – Spina Bifida Association US

BIO

Amy McPherson
Social Inclusion

Scientist – Bloorview Research Institute

BIO

Richard H. Finnell
Genetics

Professor – Center for Precision Environmental Health

BIO

Anne Molloy
Causes

Emeritus Professor

BIO

Federica Saugo
Fundraising Coordinator
Our staff
Dr. Sylvia Roozen
Secretary 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 Jopp
Information Officer

RenĂ©e gathers and disseminates the latest SBH related news, keeps track of scientific publications and supports IF’s communication work.

Hildur Ă–nnudĂłttir
EU Policy Officer

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

Anna Verster †
Senior Advisor on Food Fortification

Founding mother of Smarter Futures https://www.smarterfutures.net/

Selma Cela
Project Manager

Selma is the project manager and coordinates several projects. If you have any questions regarding one of IF’s project, please send an email to selma.cela@ifglobal.org

Sinem Sari
Communications Coordinator

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 Touil
Admin Officer

Yasmina is the admin officer. If you have any administrative questions, please send an email to yasmina.touil@ifglobal.org

Board members
Youth group
Global experts
Volunteers

Our work

Our members

IF’s fast-growing membership now includes 68 Spina Bifida and Hydrocephalus (SBH) associations in Africa, Australia, the Americas, Asia and Europe. Membership of IF is open to all nationally registered SBH associations that share IF’s vision and mission and actively involve people with SBH in their work. Organisations, institutions, companies and individuals with an interest in SBH and the aim to widen the extent of their activities are also welcome to apply for IF membership. Check out our Membership Guide to learn more!

Please note that this map also displays SBH associations that are not a member of IF. They are represented by a red dot. If you know of an SBH association not represented below, please email us at info@ifglobal.org.

IF Award

Each year, the International Federation for Spina Bifida and Hydrocephalus (IF) presents the IF Award to an individual or organisation in recognition of their special contribution to the service of people with disabilities in general or to people with Hydrocephalus and Spina Bifida in particular.