A platform for sharing best practices for the management of rare diseases

Principal investigator: Panos Kanavos
Start date: 01 April 2011
End date: 31 March 2016
Region: Europe
Keywords: health technology regulation & assessment

RARE-Bestpractices was a four year project (January 2013-December 2016) funded by the European Commission under the FP7 Cooperation Work Programme: Health-2012. The project focused to the specific action HEALTH.2012.2.4.4-3: Best practice and knowledge sharing in the clinical management of rare diseases.

The  main goal of the project was to create a platform to improve the management of rare disease patients. It aimed to:

  • promote communication on the management of rare diseases by disseminating trustworthy guidelines globally
  • identify and prioritize rare diseases research needs
  • facilitate timely, effective and efficient translation of research results into patient oriented strategy on the clinical as well as the public health level, in support to IRDiRC activities


Visit the RARE-Bestpractices project website.

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