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The International Federation for Hydrocephalus and Spina Bifida operates worldwide with the mission to improve the quality of life of people affected by Hydrocephalus and/or Spina Bifida.
With regards to doctors who advise termination of pregnancy on the grounds of disability, the Federation has stated: "Some doctors judge that people with Spina Bifida and Hydrocephalus have a very poor quality of life which may not be worth living. This is a narrow, medically-aligned view which disregards other viewpoints. […] Those best qualified to judge -people with Spina Bifida and Hydrocephalus- are convinced that their lives are definitely worthwhile."
The website also reveals that: "At the IF conference in 2000, 270 people with Spina Bifida from all over the world gathered in Toulouse and adopted a resolution which stated that the quality of their life should not be a reason for abortion or euthanasia." In 2012, the Federation condemned the idea of ‘after-birth abortion’ proposed by an Italian and Australian doctor. The charity stressed that "it is the lack of treatment that causes pain and suffering, not the initial disability."
Link to website: http://www.ifglobal.org/
Please send any information you may have about this charity to SPUC, either by email to rhoslynthomas@spuc.org.uk or by post to SPUC HQ.