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.
SEE THE EUROPLAN REPORT ON INDICATORS