workshop 7 - "presentation of the international federation for spina bifida and...
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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)TRANSCRIPT
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Primary prevention of NTD's and IF
• EURODIS• Rare Diseases Europe• Amsterdam 13-14 May
2011• Amsterdam
• Pierre Mertens, President IF
• www.ifglobal.org
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an obvious gap in the skin covering the spine, the vertebrae and the nervous system are damaged, leading to some degree of paralysis
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IF network of knowledge on SB&H
Four domains:- Human Rights- International solidarity - Network Development - Primary prevention
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IF ' s Mission
- improve the quality of life of persons with Spina Bifida & Hydrocephalus
- primary prevention
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Human rights
• Access to care & treatment
• Right to life– Right of the child– UNCPWD– WHO resolution
on Birth defects
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International Solidarity
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Network development
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Spina Bifida became a 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
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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
Primary Prevention
The IF- network of people with Spina Bifida took the lead in primary prevention
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IF advocates for mandatory fortification of staple food with Folic Acid and started a European Awareness campaign.
11
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What do we want?• To improve periconceptional folate levels in all women of childbearing
age.
• Fortification of staple food with Folic Acid
1227 January 2010European Parliament, Brussels
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Folic Acid prevention in 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
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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 28th June.
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Cooperation of IF & Bayer assures
• Balanced information• Correct information• Visibility of NTD's• Training the IF network
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prevention should be part of the rare disease action
plans• National plans, only
Spain includes prevention
• World Health Assembly resolution on Birth defects
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Thank you
www.ifglobal.org