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International Federation for Spina Bifida and Hydrocephalus
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International Federation for Spina Bifida and Hydrocephalus - Homepage


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About IF


IF’s activities are focused on the dissemination of information and expertise throughout the world to families, individuals, professionals and volunteers involved in the field of Hydrocephalus and Spina Bifida.

Support of national associations for SB and/or Hydrocephalus
IF has contacts with national associations for spina bifida and/or hydrocephalus in more than 40 countries. IF stimulates and supports the creation of new groups and national associations.

IF developed a basic manual on how to set up a self help group. You can download this leaflet here.   

IF has compiled a set of guidelines for national associations,  to assist national associations in their development. You can download the guidelines here. (link to Word document)

IF contributes  to research projects by contributing in kind, in knowledge and in experience. In 1999, IF granted a research award in cooperation with the CDI Foundation, and has contributed to the following research projects:

- NEURAL TUBE DEFECTS IN DAR ES SALAAM, a preliminary study to provide a working estimate on the incidence and the pattern of neural tube defects at the Muhimbili National Hospital. ADA Kinasha and Karim Manji

- POST INFECTIOUS HYDROCEPHALUS:  The Most Common Cause of Hydrocephalus in Uganda. Benjamin C. Warf, M.D. Lynda MacGowen, R.N.

- ENDOSCOPIC THIRD VENTRICULOSTOMY: Initial Experience at CURE Children's Hospital of Uganda. Benjamin C. Warf, M.D and Lynda MacGowen, R.N.

IF started an internal discussion on society’s attitudes to unborn children with a disability and decided to bring this discussion to an international level. In 2000 an ethical study and workgroup on the question of early pregnancy termination of children with Spina Bifida & Hydrocephalus was initiated. This ethical group is made up of experts from 7 different countries and aims to make this discussion more than merely a medical issue. Dr. Verpoorten, an acknowledged expert on spina bifida, was asked to make a study of medical literature relating to pregnancy termination. The conference resulted in the Toulouse resolution on the quality of life of people with Spina Bifida & Hydrocephalus.

IF participated in the DPI Europe meeting on Bio-ethics.

Dr C. Verpoorten – study of medical literature relating to pregnancy termination

IF Toulouse Resolution 

Projects in developing countries
6 years ago, IF started a project for early intervention, treatment, rehabilitation and follow-up of Spina Bifida and Hydrocephalus patients in developing countries.

The aim of this project is to prevent as far as possible, Spina Bifida and Hydrocephalus, and to improve the lives of people with Spina Bifida and Hydrocephalus and their families, by organising appropriate training, surgery and rehabilitation, through existing medical, therapeutic and community based services in the various partner countries, and possibly elsewhere. To read more on the IF projects, click here.

Influencing international policy and debate
IF is increasing their influence in international issues, which are likely to affect people with Spina Bifida and Hydrocephalus and their families.

IF is especially focusing on:

  • Human rights and inclusion of people with spina bifida and/or hydrocephalus
  • The rights of children with spina bifida and/or hydrocephalus in developing countries
  • Prevention and issues related to bio-ethics and prenatal diagnosis

Networking on an international level
Networking - Liaison with world organisations

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