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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 prevalence 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 of Directors
  • Youth group
  • Global experts
  • Volunteers
Dr. Sylvia Roozen
Secretary 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 Touil
Admin Officer

Yasmina is the admin officer. If you have any administrative questions, please send an email to [email protected]

Lila Sylviti
Communications Coordinator

As the Communications Coordinator, Lila oversees the IF communication activities and campaigns to raise awareness about Spina Bifida and Hydrocephalus. If you have any questions regarding communications, contact Lila at [email protected].

Kateryna Shcherbyna
Project Officer

Kateryna is the project officer and oversees the development, implementation, and dissemination of multiple key projects relevant to IF’s Members. In particular youth activities. For more information, send an email to [email protected].

Vacant Position
Policy Officer

Are you a passionate about policy development and want to contribute to the success of several international policy priorities for our global community? Send us your CV and Motivation Letter at [email protected]

Vacant Position
Program 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 †
Senior Advisor on Food Fortification

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

Victoria Sandoval
President, Guatemala
Aziza Elnaeema
Sudan
Slaveya Kostadinova
Bulgaria
Santosh Karmarkar
India
Kateryna Shcherbyna
Ukraine (chair)
Laura Rosillo Beneyto
Spain
Ajok Proscovia
Uganda
Patrícia Albertová
Slovakia
Harichandana Mynampati
India
Rereloluwa Adeolu
Nigeria
Mirela Bukovac
Croatia
Nebiyat Tesfaye
Ethiopia
Rebecca Austin
Australia
Samuel Opeyemi Folorunsho
Nigeria

 

Malik Armughan Ali
Pakistan
Jurn Anthonis
Belgium
Chen Miaohua
Taiwan

 

To contact the IF International Youth Group SBH, please send an email to [email protected]

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
IF is looking for you!

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 Roozen
Secretary 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 Touil
Admin Officer

Yasmina is the admin officer. If you have any administrative questions, please send an email to [email protected]

Lila Sylviti
Communications Coordinator

As the Communications Coordinator, Lila oversees the IF communication activities and campaigns to raise awareness about Spina Bifida and Hydrocephalus. If you have any questions regarding communications, contact Lila at [email protected].

Kateryna Shcherbyna
Project Officer

Kateryna is the project officer and oversees the development, implementation, and dissemination of multiple key projects relevant to IF’s Members. In particular youth activities. For more information, send an email to [email protected].

Vacant Position
Policy Officer

Are you a passionate about policy development and want to contribute to the success of several international policy priorities for our global community? Send us your CV and Motivation Letter at [email protected]

Vacant Position
Program 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 †
Senior Advisor on Food Fortification

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

Board of Directors
Youth group
Global experts
Volunteers

Our work

Our members

IF’s fast-growing membership now includes over 100 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 [email protected].

IF Award

During each international conference, 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.

In 2021, Anna Verster – IF Senior Advisor Food Fortification received a special IF Award of Excellence on behalf of IF and the partners of Smarter Futures. A scholarship memorial fund in her name has been created to honor Anna’s legacy and stimulate young academics to make fortification with folic acid a reality in countries worldwide.