International Federation for Spina Bifida and Hydrocephalus

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.

None declared

No lobbyists with EP accreditations

None declared

None declared

Ms Stefania Pirani (Programme Manager Europe)

III - Non-governmental organisations

Non-governmental organisations, platforms and networks and similar