RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases

Over the last decade the European Union (EU) has been coordinating actions addressing various aspects of rare diseases and has funded several cross-border research projects. Recently the EU has initiated the biggest rare disease interna- tional collaborative effort by launching the International Rare Diseases Research Consortium (IRDiRC). RARE-Bestpractices is one of the more than 100 collaborative research projects on rare diseases funded under the Seventh Framework Programme for Research and Technological Development (FP7/2007-2013) [1]. As a wide, open and inclusive network, RARE-Bestpractices will build on the knowledge of the experts in rare disease