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Profile of registrant

International Federation for Spina Bifida and Hydrocephalus

Identification number in the register: 93086892756-13
Registration date: 10/12/09 16:31:09

The information on this organisation was last modified on 27/11/13 09:42:53
The date of the last annual update was 27/11/13 09:42:53

Registrant : Organisation or self-employed individual

Name/company name: International Federation for Spina Bifida and Hydrocephalus
Acronym: IF
Legal status: international not-for-profit organisation
Website address:


Section: III - Non-governmental organisations
and more precisely: Non-governmental organisations, platforms and networks and similar

Person with legal responsibility

Surname, Name: Mrs  Whiteford Margot
Position: President

Permanent person in charge of EU relations

Surname, Name: Ms  Stefania Pirani
Position: Programme Manager Europe

Contact details:

Contact details of organisation's head office: 16 Cellebroersstraat 
Brussels 1000
Telephone number: (+32) 025020413
Fax number: (+) 
Other contact information:

Goals / remit

Goals / remit of the organisation: IF’s mission is to improve the quality of life of people Spina Bifida and/or Hydrocephalus throughout the world and to decrease the prevalence of Spina Bifida and Hydrocephalus by primary prevention.

Improving the quality of life and primary prevention are the motivation for everything IF undertakes. This is the same for the IF member associations. The most important way to fulfil that mission is to spread knowledge and to encourage contact between parents and persons with Spina Bifida and/or Hydrocephalus.

The importance of contact is recognition, not feeling alone or isolated, learning from each other. Parents as well as persons with Spina Bifida and/or Hydrocephalus often mention how important these contacts are.

Knowledge is the first essential step towards minimising the effects of impairment. It ensures that people with Spina Bifida and/or Hydrocephalus are full partners in decision making and that carers, professionals and persons with Spina Bifida and/or Hydrocephalus all have access to the latest information.

IF’s knowledge comes from its unique global network with member associations in more than 40 countries. This network is the IF Knowledge Network, exchanging knowledge, information and examples of good practice at an international level. IF does this by organising workshops and conferences, and also through the IF projects in developing countries. The IF Knowledge Network initiates, encourages and facilitates research.
Parent groups and national associations play a key role in gaining and circulating information. This way IF encourages and facilitates new groups and associations.

The IF Knowledge Network is the platform for discussions on ethics, prevention, food fortification, new developments in treatment and care, and ensures that people with Spina Bifida and/or Hydrocephalus have a voice at global level.

IF represents people with Spina Bifida and Hydrocephalus and their organisations at global level in other international bodies such as the United Nations, the World Health Organisation, the Council of Europe, UNICEF and NGOs.
The organisation's fields of interests are:
  • global

Number of persons engaged in activities falling under the scope of the Transparency Register

Number of persons: 20
Complementary information:

Persons accredited for access to European Parliament premises

No accredited persons


Main EU initiatives covered the year before by activities falling under the scope of the Transparency Register:

disability rights, prevention of disability, food fortification with folic acid, access to life, access to care and treatment.

Fields of interest for e-mail alerts on consultations and roadmaps;

Fields declared by the organisation:
  • Development
  • Employment and Social Affairs
  • Food Safety
  • Humanitarian Aid
  • Justice and Fundamental Rights
  • Public Health
  • Transport
  • Youth


Total number of members that are natural persons: 0
Number of member organisations: 41
Member organisations (Number of members) :
  • Association des malades de Spina Bifida de Mostaganem (20 members)
  • Asociación Para la Espina Bífida e Hidrocefalia (APEBI) (200 members)
  • Spina Bifida Association Queensland (200 members)
  • Spina Bifida und Hydrocephalus Österreich (SB&HÖ) (100 members)
  • Vlaamse Vereniging voor Spina Bifida en Hydrocephalus vzw (VSH) (350 members)
  • Associaçao de Espinha Bífida e Hidrocefalia do Rio de Janeiro (AEBH) (100 members)
  • Spina Bifida and Hydrocephalus Association of Canada (SBHAC) (1,000 members)
  • Fundación Sin Barreras (100 members)
  • Udruga osoba i roditelja djece sa spinom bifidom "Aurora" (100 members)
  • Rygmarvsbrokforeningen af 1988 (200 members)
  • The Estonian MMC and HC Society (200 members)
  • Suomen CP-liitto ry (300 members)
  • Fédération Française des Associations du Spina Bifida (FFASB) (250 members)
  • Arbeitsgemeinschaft Spina Bifida und Hydrocephalus (ASBH) (600 members)
  • Asociación Guatemalteca de Espina Bífida (AGEB) (200 members)
  • Fundación Amado Josue (100 members)
  • Spina Bifida Hydrocephalus Ireland (SBHI) (400 members)
  • Spina Bifida Italia (500 members)
  • Associazione Spina Bifida Italia (ASBI) (400 members)
  • Spina Bifida Association of Japan (500 members)
  • Association pour le Spina Bifida a.s.b.l. (50 members)
  • Asociación Mexicana de Espina Bifida, A.C. (AMEB) (100 members)
  • BOSK Work Group Spina Bifida & Hydrocephalus (500 members)
  • Ryggmargsbrokk- og hydrocephalusforeningen (250 members)
  • Asociacion Peruana de Espina Bifida e Hidrocephalia Arequipa (APEBHI) (250 members)
  • Asociación de Espina Bífida e Hidrocefalia del Perú (ASESBIH PERÚ) (250 members)
  • Stowarzyszenie Chorych z Przepukliną Oponowo-Rdezeniową R.P. (ASBP) (200 members)
  • Associação Spina Bifida e Hidrocefalia de Portugal (ASBIHP) (300 members)
  • Asociatia Romana de Spina Bifida si Hidrocefalie (600 members)
  • Association of Spina Bifida and Hydrocephalus St. Petersburg (100 members)
  • Scottish Spina Bifida Association (SSBA) (400 members)
  • Spina Bifida and Hydrocephalus Association of Serbia (100 members)
  • Slovenská spoločnosť pre spina bifida a/alebo hydrocefalus, o.z. (100 members)
  • Federación Española de Asociaciones de Espina Bífida e Hidrocefalia (F (4,000 members)
  • Associació Catalana d'Espina Bífida i Hidrocefàlia (200 members)
  • Spina Bifida Federal Association (100 members)
  • RBU (350 members)
  • Schweizerische Vereinigung Spina Bifida und Hydrocephalus (SBH) (250 members)
  • Spina Bifida Derneği (1,000 members)
  • Association for Spina Bifida and Hydrocephalus (ASBAH) (2,000 members)
  • Spina Bifida Association of America (SBAA) (10,000 members)
The organisation has members/is represented in the following country(countries):

  • PERU
Complementary information:


Information on (i) organisation's membership of any associations/federations/confederations or (ii) relationships to other bodies in formal or informal networks.

European Disability Forum
Participatory Status at the Council of Europe
Consultative status at ECOSOC
Member of the Flour Fortification Initiative
Funded through Progress by European Commission
International Disability Alliance
International Disability and Development Cooperation Consortium

Financial data

Financial year: 01/2010 - 12/2010
Total budget: 854,223
of which public financing: 832,921
- from European sources:
- Procurement:
- Grants: 61,000
- from national sources: 606,709
- from local/regional sources:
European Commission : 125,000
Other : 40,212
from other sources: 21,302
- donations:
- contributions from members: 8,340
financial income : 12,962
Estimated costs to the organisation directly related to representing interests to EU institutions in that year: < 50000  €
Other (financial) information provided by the organisation:

Code of conduct

By its registration the organisation has signed the Transparency Register Code of Conduct.