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IF - International Federation for Spina Bifida and Hydrocephalus

 

About IF

IFsbh, an international non-profit organisation - was founded by people with spina bifida and hydrocephalus (SBH) and their families in 1979. Over the years, it has grown from a voluntary association into a professional disabled people’s organisation with global coverage, democratic structure and transparent and accountable processes.

The majority of IF member organisations are led and governed by adults with SBH or parents of children with SBH. IF’s fast-growing membership includes 57 member organisations on all continents, out of which 23 in EU Member States (as well as Norway, Switzerland, Serbia and Turkey).

IF’s mission is to reduce the incidence of spina bifida and hydrocephalus by primary prevention, and to improve the quality of life of people with SBH and their families through human rights education, political advocacy, research and community-building. In its European work, IF advocates for the right to health of persons with SBH and non-discriminatory access to healthcare for all persons with disabilities. 

IF’s work is based on five fundamental values:

  • Human rights of people with SBH in accordance with the UN Convention on the Rights of Persons with Disabilities;
  • Transparency and accountability to our members, donors and external stakeholders;
  • Participation of children and adults with SBH and their families in our work;
  • Cooperation with international, regional and national bodies, NGOs, professional associations and other stakeholders who share our vision and goal;
  • Inclusiveness and respect for the regional, cultural and socioeconomic specificities of our global members.

Type: International disease-specific organisation

Disease area: Spina bifida and hydrocephalus. Spina bifida is a neural tube birth defect (NTD) which occurs within the first four weeks of pregnancy. The spinal column fails to develop properly resulting in varying degrees of permanent damage to the spinal cord and nervous system. Infants born with spina bifida may have an open lesion on their spine where significant damage to the nerves and spinal cord occurs. Although the spinal opening is surgically repaired shortly after birth, the nerve damage is permanent. This results in varying degrees of paralysis of the lower limbs, depending largely on the location and severity of the lesion.

Representative: Janina Arsenjeva, Europe Programme Manager

Contact details: 

16 rue des Alexiens
1000 Bruxelles
Belgium

Tel: +32 (0)2 502 0413
Email: info@ifglobal.org; janina.arsenjeva@ifglobal.org

For further information, please visit IF's website: http://www.ifglobal.org/