Towards a central registry for rare disease patients in Belgium

Last updated on 23-8-2019 by Anonymous (not verified)

Scientific poster, presentation or proceeding



In 2009 the European Commission asked the Member States to develop a strategy to improve the care of rare disease patients by 2013 (2009/C 151/02). In Belgium, recommendations for measures to fill unmet needs of rare disease patients were formulated by the Fund of Rare Diseases and Orphan Drugs at the King Baudouin Foundation. As a result, for 2012-2013, the government provides a budget to work out the implementation of a central rare disease registry collecting a minimum common dataset. Indeed, registration of rare diseases would be highly beneficial to patients, caregivers, authorities, r…

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