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RARE-Bestpractices: 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