Primary prevention of NTD's and IF <ul><li>EURODIS </li></ul><ul><li>Rare Diseases Europe </li></ul><ul><li>Amsterdam 13-1...
an obvious gap in the skin covering the spine,  the vertebrae and the nervous  system are damaged,  leading to some degree...
 
IF network of knowledge on SB&H <ul><li>Four domains: </li></ul><ul><li>- Human Rights </li></ul><ul><li>-  International ...
IF ' s Mission <ul><li>- improve the quality of life of persons with Spina Bifida & Hydrocephalus </li></ul><ul><li>- prim...
Human rights <ul><li>Access to care & treatment  </li></ul><ul><li>Right to life </li></ul><ul><ul><li>Right of the child ...
International Solidarity
Network development
Spina Bifida became a rare disease <ul><li>Not in pregnancies but in newborns </li></ul><ul><li>Consequences </li></ul><ul...
Primary Prevention With Folic Acid  the same child  is born without a disability! A daily intake of 0.4 mg of Folic Acid, ...
IF advocates for mandatory fortification of staple food with Folic Acid and started a European Awareness campaign.
What do we want? <ul><li>To improve periconceptional folate levels in  all  women of childbearing age.  </li></ul><ul><li>...
Folic Acid prevention in Europe <ul><li>Majority is not taking supplements with FA </li></ul><ul><li>Pregnancies unplanned...
<ul><li>IF produced  in 2009 its first report on Prevention of NTD's in Europe and presented in a hearing in the European ...
Cooperation of IF & Bayer assures  <ul><li>Balanced information </li></ul><ul><li>Correct information </li></ul><ul><li>Vi...
prevention should be part of the rare disease action plans <ul><li>National plans, only Spain includes prevention </li></u...
Thank you www.ifglobal.org
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Workshop 7 - "Presentation of the International Federation for Spina Bifida and Hydrocephalus’ primary prevention study"

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

  1. 1. Primary prevention of NTD's and IF <ul><li>EURODIS </li></ul><ul><li>Rare Diseases Europe </li></ul><ul><li>Amsterdam 13-14 May 2011 </li></ul><ul><li>Amsterdam </li></ul><ul><li>Pierre Mertens, President IF </li></ul><ul><li>www.ifglobal.org </li></ul>
  2. 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. IF network of knowledge on SB&H <ul><li>Four domains: </li></ul><ul><li>- Human Rights </li></ul><ul><li>- International solidarity </li></ul><ul><li>- Network Development </li></ul><ul><li>- Primary prevention </li></ul>
  4. 5. IF ' s Mission <ul><li>- improve the quality of life of persons with Spina Bifida & Hydrocephalus </li></ul><ul><li>- primary prevention </li></ul>
  5. 6. Human rights <ul><li>Access to care & treatment </li></ul><ul><li>Right to life </li></ul><ul><ul><li>Right of the child </li></ul></ul><ul><ul><li>UNCPWD </li></ul></ul><ul><ul><li>WHO resolution on Birth defects </li></ul></ul>
  6. 7. International Solidarity
  7. 8. Network development
  8. 9. Spina Bifida became a rare disease <ul><li>Not in pregnancies but in newborns </li></ul><ul><li>Consequences </li></ul><ul><ul><li>Closing down Spina Bifida Units </li></ul></ul><ul><ul><li>Orphan Drugs </li></ul></ul><ul><ul><li>Lack of adult clinics and services </li></ul></ul><ul><ul><li>Budgets Research cutting down </li></ul></ul><ul><ul><li>SB seen as a solved problem </li></ul></ul><ul><ul><li>Loss of expertise and knowledge </li></ul></ul>
  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
  10. 11. IF advocates for mandatory fortification of staple food with Folic Acid and started a European Awareness campaign.
  11. 12. What do we want? <ul><li>To improve periconceptional folate levels in all women of childbearing age. </li></ul><ul><li>Fortification of staple food with Folic Acid </li></ul>27 January 2010 European Parliament, Brussels
  12. 13. Folic Acid prevention in Europe <ul><li>Majority is not taking supplements with FA </li></ul><ul><li>Pregnancies unplanned </li></ul><ul><li>Lack of awareness on Folic Acid </li></ul><ul><li>Higher incidence in population with lower social economic status </li></ul><ul><li>Difficult to influence the general population </li></ul>
  13. 14. <ul><li>IF produced in 2009 its first report on Prevention of NTD's in Europe and presented in a hearing in the European Parliament in January 2010. The second report will be presented this year on the 28 th June. </li></ul>
  14. 15. Cooperation of IF & Bayer assures <ul><li>Balanced information </li></ul><ul><li>Correct information </li></ul><ul><li>Visibility of NTD's </li></ul><ul><li>Training the IF network </li></ul>
  15. 16. prevention should be part of the rare disease action plans <ul><li>National plans, only Spain includes prevention </li></ul><ul><li>World Health Assembly resolution on Birth defects </li></ul>
  16. 17. Thank you www.ifglobal.org
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