Primary prevention of NTD's and IF • EURODIS • Rare Diseases Europe • Brussels 2012 •
Pierre Mertens, President IF •
www.ifglobal.org
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 Four domains: - Human Rights - International solidarity - Network Development - Primary prevention
IF ' s Mission - improve the quality of life of persons with Spina Bifida & Hydrocephalus - primary prevention
Human rights • •
Access to care & treatment Right to life – – –
Right of the child UNCPWD WHO resolution on Birth defects
International Solidarity
Network development
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
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.
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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
27 January 2010 European 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
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 was presented last year on the 28th June.
Cooperation of IF & Bayer assures
• • • •
Balanced information Correct information Visibility of NTD's Training the IF network
prevention should be part of the rare disease action plans •
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