workshop 7 - "presentation of the international federation for spina bifida and...

Primary prevention of NTD's and IF

• EURODIS• Rare Diseases Europe• Amsterdam 13-14 May

2011• Amsterdam

• 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

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

IF advocates for mandatory fortification of staple food with Folic Acid and started a European Awareness campaign.

11

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

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 will be presented this 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• National plans, only

Spain includes prevention

• World Health Assembly resolution on Birth defects

Thank you

www.ifglobal.org