Project description



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



Project aims

The  main goal of the project is to create a platform to improve the management of rare disease patients. It aims 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.

Project objectives

  • build a comprehensive public database of trustworthy guidelines, ranging from diagnostic tests and treatments to the organization of care, to help professionals, patients, policy makers with the best and most up to date information
  • produce mechanisms to identify and prioritize rare diseases clinical research needs to optimize as well as redefine the clinical research agenda taking into consideration both patients’ and clinicians’ needs and interests
  • identify available notations for graphic representation of processes within guidelines to improve user understandability and implementation
  • define to what extent conclusions from cost-effectiveness analyses for pharmaceuticals are accounted for and implemented in best practice guidelines across a range of countries
  • set up training activities targeted at key stakeholders to spread expertise and knowledge in the field of  guidelines.