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International Federation for Spina Bifida and Hydrocephalus
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About IF

Introduction

The International Federation for Spina Bifida and Hydrocephalus (IF) is the world-wide umbrella organisation (INGO) for Spina Bifida and Hydrocephalus organisations. It was created in 1979 by national organisations of people with these impairments and their parents. Today IF's membership consists of 35 regional and national umbrella organisations for Spina Bifida and Hydrocephalus. Further, IF has an intense contact with regional and national organizations in over 50 countries, spread over five continents. 

 

IF aims to disseminate information and expertise throughout the world to families, individuals, professionals and volunteers involved in the Hydrocephalus and Spina Bifida field.

 

The mission of IF is to improve the quality of life of people with Spina Bifida and Hydrocephalus throughout the world and to decrease the prevalence of Spina Bifida and Hydrocephalus by primary prevention.

 

In industrialised countries the coming together of parents and adults with Spina Bifida and Hydrocephalus in national organisations was a significant step  towards  improvement of services. These organisations have lobbied for and assisted in the establishment of better services for people and for their families who are now increasingly able to lead lives close to 'normal'.

 

In developing countries however, many survive, but in conditions which for the individual and its family vary from appalling to inhuman. While national organisations will specifically focus on service delivery in their own countries, IF looks across borders and facilitates the creation and strengthening of  activities of national organisations in those countries where services are still poor or non-existent.

 

In some of these countries IF has encouraged parents and other people involved to come together and work out a strategy, which has resulted in  the formation of  local organisations and  IF projects for early detection, treatment and rehabilitation. These projects show solidarity between the North and the South.

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