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Introducing the International Federation for Spina Bifida and Hydrocephalus: Spina bifida is our public health concern

Created in 1979, the International Federation for Spina Bifida and Hydrocephalus (IF), a non-governmental organization based in Brussels, is the global umbrella organization for 50 national and regional spina bifida and hydrocephalus organizations. IF works to improve the quality of life for people with spina bifida and hydrocephalus and prevent the occurrence of spina bifida.

In recent years, the rates of neural tube defects have decreased in some countries; however, there is still much work to be done. Expanding mandatory food fortification with folic acid to countries where neural tube defects remain prevalent is an important goal for IF and among their core activities. To this end, IF fully supports CDC’s Birth Defects COUNT global initiative to reduce death and lifelong disabilities resulting from neural tube defects.

Primary Prevention and Access to Care

“I was aware that folic acid reduced chances of conceiving a baby with spina bifida from the books I read when planning a pregnancy. But my third pregnancy was unplanned and Hattie was born with spina bifida…I would recommend that governments promote folic acid use to all women of childbearing age, whether they are planning a family or not!” – Zoe Burnay

In 2005, IF members adopted the IF Policy Statement on Prevention of Neural Tube Defects and Mandatory Food Fortification calling for action to

  • Promote the health benefits of folic acid,
  • Ratify a policy calling on all countries to fortify staple foods with folic acid, and
  • Encourage further research on the prevention of spina bifida and hydrocephalus.

According to Lieven Bauwens, IF Secretary General, “We are interested in the development and implementation of global prevention policies, fortification, supplementation, or any other strategy. This is a good way of using our members’ expertise to explain to their governments why and how the WHO standard on prevention of neural tube defects should be implemented.”

IF values collaboration with partners and maintains a strong network with experts in spina bifida and hydrocephalus worldwide. In 2009, IF engaged in a new partnership with Bayer HealthCare Pharmaceuticals to raise awareness of spina bifida and hydrocephalus in Europe. The alliance produced two joint reports on the prevention of neural tube defects, including spina bifida. Together, IF and Bayer continue to collect and disseminate critical information about the prevention of neural tube defects globally.

Prevention measures for the next generation should not diminish efforts towards treatment, care, and support for those with spina bifida and hydrocephalus. Despite ongoing medical advances, many children and adults living with spina bifida and hydrocephalus continue to experience barriers in accessing comprehensive multidisciplinary treatment and care services. IF is concerned that individuals living with these conditions also experience stigma and discrimination, and therefore aims to increase inclusion in education and the workforce, as well as improve access to lifelong medical treatment and care.

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