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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.

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
Lieven Bauwens
IF Secretary General

Lieven is IF’s official representative and works towards growing and strengthening IF and its network. If your organisation wants to support or partner with IF, please send an email to lieven.bauwens@ifglobal.org

Janina Arsenjeva
Europe Programme Manager

Janina’s field is the capacity-building work in Europe, human rights advocacy and the IF Youth Group. If you have a question on any of these topics, please send an email to janina.arsenjeva@ifglobal.org

Katalijne Van Diest
Programme Manager International Solidarity

Katalijne is responsible for IF’s work to improve the lives of those living with SBH in developing countries. If you have questions about available services, or new ideas for collaboration, please send an email to katalijne.vandiest@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. If you have any general questions on SBH, please send an email to renee.jopp@ifglobal.org

Carmen Clemente
Communication Assistant

Carmen is in charge of all our communication and aims to increase the visibility of IF and of SBH.  If you have any questions on how to raise awareness or to communicate effectively, please send an email to carmen.clemente@ifglobal.org

Ghislaine Gerbier
Office Manager

Ghislaine ensures the smooth running of the office. She is the person to contact in case you have any question or doubt regarding IF’s administration, logistics or accountability. Please send an email to ghislaine.gerbier@ifglobal.org

Martine Austin
Programme Manager Global Prevention

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 Verster
Senior Adviser on Food Fortification and Project Coordinator, Smarter Futures

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

Mrs. Margo Whiteford
IF President, Scotland
Mr. Tom Scott
Ireland
Mrs. Papatya Alkan Genca
Turkey
Mrs. Elena Zappoli
Argentina
Mr. Cato Lie
Norway
Mrs. Emma Suardiaz
Spain
Mr. Nicola Busata
Italy
Dr. Aziza Mustafa Elnaeema
Sudan
František Horn
Slovakia
Ege Anli
Turkey
Elisa GarcĂ­a de Ceca
Spain
Merlin Kizant
Estonia
Nele Vanhecke
Belgium
Adrian Philip
Poland

 

 

To contact the Youth Group, please send an email to youth.group@ifglobal.org

Mirela Bukovac
Croatia
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

Giulia Bizzoto
Europe Programme

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.

Maiken Bekke
Communication

Period: September 2017 – July 2018

Support on social media and website management, video editing, creation of newsletters and liaising with members

Giuseppe Martone
Communications Volunteer

Period: September 2018 – ongoing

Support on creating and publishing newsletters and press releases. Social media and website management, video editing.

communication@ifglobal.org

Our staff
Lieven Bauwens
IF Secretary General

Lieven is IF’s official representative and works towards growing and strengthening IF and its network. If your organisation wants to support or partner with IF, please send an email to lieven.bauwens@ifglobal.org

Janina Arsenjeva
Europe Programme Manager

Janina’s field is the capacity-building work in Europe, human rights advocacy and the IF Youth Group. If you have a question on any of these topics, please send an email to janina.arsenjeva@ifglobal.org

Katalijne Van Diest
Programme Manager International Solidarity

Katalijne is responsible for IF’s work to improve the lives of those living with SBH in developing countries. If you have questions about available services, or new ideas for collaboration, please send an email to katalijne.vandiest@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. If you have any general questions on SBH, please send an email to renee.jopp@ifglobal.org

Carmen Clemente
Communication Assistant

Carmen is in charge of all our communication and aims to increase the visibility of IF and of SBH.  If you have any questions on how to raise awareness or to communicate effectively, please send an email to carmen.clemente@ifglobal.org

Ghislaine Gerbier
Office Manager

Ghislaine ensures the smooth running of the office. She is the person to contact in case you have any question or doubt regarding IF’s administration, logistics or accountability. Please send an email to ghislaine.gerbier@ifglobal.org

Martine Austin
Programme Manager Global Prevention

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 Verster
Senior Adviser on Food Fortification and Project Coordinator, Smarter Futures

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

Board members
Youth group
Global experts
Volunteers

Our members

IF’s fast-growing membership now includes 60 member organisations in Africa, Australia, the Americas, Asia and Europe. Membership of IF is open to all nationally registered organisations that share IF’s vision and mission and actively involve people with SBH in their work.

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.