What is IF
The International Federation for Spina Bifida and Hydrocephalus (IF) is the worldwide 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 members consist of 50 regional and national umbrella organisations for Spina Bifida and Hydrocephalus. Furthermore, IF has intensive contact with regional and national organisations in over 50 countries, spread over five continents.
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 developed a basic manual on how to set up a support group. IF has compiled a set of guidelines for national associations, to assist national associations in their development.Given the importance and valuable work that each organisation does in its respective country for people with Spina Bifida and/or Hydrocephalus, IF strives to reinforce national organisations through a variety of activities like workshops, conferences, knowledge transfer, capacity building as well as consultancy and guidance.
Each year, the International Federation for Spina Bifida and Hydrocephalus (IF) presents the IF Award to an individual or organisation in recognition of the special contribution they have made to the service of people with disabilities in general or to people with Hydrocephalus and Spina Bifida in particular.
The award itself is in the form of a bronze statue. It is designed and created for IF by the Belgian artist Pierre Mertens to replace the previous statue created by the Swedish artist Mr Olovson.
The current IF Award is a statue representing an Etruscan woman with a hole in her back and abdomen. It is representing both ‘the pregnancy in danger by prenatal diagnoses' as well as the ‘disability' represented by IF. The view through the body represents hope. It is a focused way of perceiving the world through the hole in the back of people.
The International Federation for Spina Biﬁda and Hydrocephalus holds Special Consultative Status at the Economic and Social Council of the United Nations (renewed in 2007) and Participatory Status at the Council of Europe (renewed in 2009). Through the PROGRESS programme, IF holds a privileged relationship with the European Commission. IF is a founding member of IF Child Help Belgium (11 September 2006), an organisation that focuses on Development Cooperation. IF is part of the Leaders Group of the Flour Fortiﬁcation Initiative (FFI), and a member of the Belgium Disability and Development Cooperation Initiative “1 op 10” (“one in ten”). The IF president holds board member status at the European Disability Forum (EDF), the Bo Hjelt Foundation, the Flemish Spina Biﬁda and Hydrocephalus Association and is a member of the General Assembly of Light For The World Belgium. Board members of IF liaise in their national organisation’s name with Atlas Alliance/NORAD (Norway) and SHIA (Sweden) to serve children with Spina Biﬁda and Hydrocephalus in Africa.