EUROPLAN Indicators (2011)

The main goal of EUROPLAN 2008-2011 was to develop recommendations on how to define strategies/plans for Rare Diseases.

These recommendations prioritized areas and actions of intervention in the field of rare diseases and provide advice on the different steps for developing a strategy/plan.

The Work Package 5 - “Selecting indicators to evaluate the achievements of Rare Diseases initiatives" of EUROPLAN 2008-201 was aimed at “identifying indicators to assess Rare Diseases initiatives" with a view on

  • monitoring the implementation;
  • evaluating the impact of the national/regional plans on Rare Diseases;
  • the involved cost in maintaining this public health information system.

The areas of interest listed in the EU proposal for a Council Recommendation, the EU Communication on RD, have been considered:


  • Area 1- Plans and strategies in the field of Rare Diseases
  • Area 2- Adequate definition, codification and inventorying of Rare Diseases
  • Area 3- Research on Rare Diseases
  • Area 4- Centres of Expertise and European Reference Networks for Rare Diseases
  • Area 5- Gathering the expertise on Rare Diseases at European level
  • Area 6- Empowerment of patient organisations
  • Area 7- Sustainability

For each area the following points are discussed:



  • Background;
  • Key Message;
  • Rationale;
  • Health context

The “REPORT ON INDICATORS for monitoring the implementation and evaluating the impact of National Plan or Strategy for rare diseases", containing 59 indicators, is a result of EUROPLAN 2008-2011.