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

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

• 1.
  Primary prevention ofNTD's and IF EURODIS Rare Diseases Europe Amsterdam 13-14 May 2011 Amsterdam Pierre Mertens, President IF www.ifglobal.org
• 2.
  an obvious gapin the skin covering the spine, the vertebrae and the nervous system are damaged, leading to some degree of paralysis
• 3.
   
• 4.
  IF network ofknowledge on SB&H Four domains: - Human Rights - International solidarity - Network Development - Primary prevention
• 5.
  IF ' sMission - improve the quality of life of persons with Spina Bifida & Hydrocephalus - primary prevention
• 6.
  Human rights Accessto care & treatment Right to life Right of the child UNCPWD WHO resolution on Birth defects
• 7.
  International Solidarity
• 8.
  Network development
• 9.
  Spina Bifida becamea rare disease Not in pregnancies but in newborns Consequences Closing down Spina Bifida Units Orphan Drugs Lack of adult clinics and services Budgets Research cutting down SB seen as a solved problem Loss of expertise and knowledge
• 10.
  Primary Prevention WithFolic 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 formandatory fortification of staple food with Folic Acid and started a European Awareness campaign.
• 12.
  What do wewant? To improve periconceptional folate levels in all women of childbearing age. Fortification of staple food with Folic Acid 27 January 2010 European Parliament, Brussels
• 13.
  Folic Acid preventionin Europe Majority is not taking supplements with FA Pregnancies unplanned Lack of awareness on Folic Acid Higher incidence in population with lower social economic status Difficult to influence the general population
• 14.
  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.
• 15.
  Cooperation of IF& Bayer assures Balanced information Correct information Visibility of NTD's Training the IF network
• 16.
  prevention should bepart of the rare disease action plans National plans, only Spain includes prevention World Health Assembly resolution on Birth defects
• 17.
  Thank you www.ifglobal.org