Survey on the Research Programmes for Rare Diseases, 2009-2010

Research Programmes on Rare Diseases in the E-Rare Partner Countries
Networking of research programmes first requires mutual knowledge of specific conditions, strategies and administrative practices. In this context, one of the WP2 objectives was to develop an inventory on the state of the art of national research programmes on rare diseases in each of the E-Rare partner countries.
 
In order to develop such inventory, a questionnaire was circulated to all Countries participating to the E-Rare project : Belgium, France, Germany, Israel, Italy, Netherlands, Spain and Turkey.
 
The following areas were explored:
 
1. Significance of the programme in the context of overall health research programmes
(Funding, objectives of the research programme, criteria for prioritising programmes)
 
2. Research priorities and funded projects
 
3. Existing infrastructures for rare diseases research
 
4. Design and implementation of the national call
 
5. Evaluation procedures
 
6. Legal/administrative procedures
 
To learn more download the publication.