The European Union council recommendation
The European Union makes a council recommendation on action in the field of rare diseases:
- Ensure that rare diseases are adequately coded and classified
- Enhance research in the field of rare diseases
- Identify Centres of Expertise by the end of 2013 and foster their participation into European Reference Networks
- Support the pooling of expertise at European level
- Share assessments on the clinical added value of orphan drugs
- Foster patient empowerment by involving patients and their representatives at all stages of the decisionmaking process
- Ensure the sustainability of infrastructures developed for rare diseases
The full Council paper can be found at the following link:
http://ec.europa.eu/health/ph_threats/non_com/docs/rare_rec2_en.pdf
See the activities of Rare Disease UK on the development of a National Plan for Rare Diseases:
http://www.raredisease.org.uk