Lieven Bauwens

Lieven Bauwens

International Federation for Spina Bifida and Hydrocephalus


Lieven Bauwens joined the EURORDIS Board of Directors in 2017.

Lieven is director of Child-Help International, a charity dedicated to supporting children with Spina Bifida/ Hydrocephalus in developing countries. He is also the president of the International Federation for Spina Bifida and Hydrocephalus, and the chair of Child-Help Belgium. In those capacities, he is a global advocate for the rights of persons with the disabilities while engaging actively in primary prevention of these impairments. He is a board member of the Food Fortification Initiative , of the International Disability Alliance, and a founding partner of the global alliance for Spina Bifida and Hydrocephalus, PUSH!, and Child-Help in Belgium, Germany, France and the Netherlands. Lieven has a background in Architecture and Business Administration, and got involved in International Federation as brother of a young man with Spina Bifida and Hydrocephalus.

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases