What is IF?

The International Federation for Spina Bifida and Hydrocephalus (IF) 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 (DPO) 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. Children are active participants in our members’ activities: they are involved in child-led activities, training workshops on independence and holiday camps. Nowadays, many young people with SBH have taken over the leadership of their organisations. In most cases, IF members choose close cooperation with medical and education professionals and researchers, given the importance of these professions to children and adults with SBH for their survival and development.

IF’s fast-growing membership now includes 51 member organisations in Africa, Australia, the Americas, Asia and Europe. Membership of IF is open to all nationally registered organisations that share IF’s vision and mission and actively involve people with SBH in their work.

In its work, IF is supported by the Global Expert PanelExpert Panel (GEP) and its Network. The Network is a multidisciplinary scientific advisory body to IF Board of directors. GEP a 7-person steering group of the wider Network. The individual GEP members are IF spokespersons on various topics, and are respected global experts in their field of expertise in top-level institutions.

PUSH AllianceAlliance has grown out of the informal PUSH community of individuals and professionals, and now includes a wide range of global institutional stakeholders working together to exchange information and advocacy materials, collect and publish data and promote the latest research on SBH.

The International Federation for Spina Bifida and Hydrocephalus holds Special Consultative Status at the Economic and Social Council of the United Nations and Participatory Status at the Council of Europe. Through the PROGRESS programme, IF holds a privileged relationship with the European Commission. IF is a founding member of Child Help, a Belgian
organisation that focuses on development cooperation. IF is part of the Executive Management Team of the Food Fortification Initiative (FFI).

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