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Workshop 7 - "Presentation of the International Federation for Spina Bifida and Hydrocephalus’ primary prevention study"

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EURORDIS - Rare Diseases Europe
EURORDIS - Rare Diseases Europe

Workshop 7 - Brainstorming & Policy Development session: Prevention "Presentation of the International Federation for Spina Bifida and Hydrocephalus’ primary prevention study" Pierre Mertens, International Federation for Spina Bifida and Hydrocephalus (IF)

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Primary prevention of NTD's and IF ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
an obvious gap in the skin covering the spine, the vertebrae and the nervous system are damaged, leading to some degree of paralysis
 
IF network of knowledge on SB&H ,[object Object],[object Object],[object Object],[object Object],[object Object]
IF ' s Mission ,[object Object],[object Object]
Human rights ,[object Object],[object Object],[object Object],[object Object],[object Object]
International Solidarity
Network development
Spina Bifida became a rare disease ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Primary Prevention With Folic Acid the same child is born without a disability! A daily intake of 0.4 mg of Folic Acid, at least two months prior to the conception and during the first months of pregnancy The IF- network of people with Spina Bifida took the lead in primary prevention
IF advocates for mandatory fortification of staple food with Folic Acid and started a European Awareness campaign.
What do we want? ,[object Object],[object Object],27 January 2010 European Parliament, Brussels
Folic Acid prevention in Europe ,[object Object],[object Object],[object Object],[object Object],[object Object]
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Cooperation of IF & Bayer assures ,[object Object],[object Object],[object Object],[object Object]
prevention should be part of the rare disease action plans ,[object Object],[object Object]
Thank you www.ifglobal.org

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Workshop 7 - "Presentation of the International Federation for Spina Bifida and Hydrocephalus’ primary prevention study"

  • 1.
  • 2. an obvious gap in the skin covering the spine, the vertebrae and the nervous system are damaged, leading to some degree of paralysis
  • 3.  
  • 4.
  • 5.
  • 6.
  • 9.
  • 10. Primary Prevention With Folic Acid the same child is born without a disability! A daily intake of 0.4 mg of Folic Acid, at least two months prior to the conception and during the first months of pregnancy The IF- network of people with Spina Bifida took the lead in primary prevention
  • 11. IF advocates for mandatory fortification of staple food with Folic Acid and started a European Awareness campaign.
  • 12.
  • 13.
  • 14.
  • 15.
  • 16.