Rare diseases

Commission expert group on rare diseases

To support EU policy on rare diseases, the Commission expert group on rare diseases may:

  • assist the Commission in the drawing up of legal instruments and policy documents, including guidelines and recommendations; 
  • advise the Commission in the implementation of Union actions and suggest improvements to the measures taken; 
  • advise the Commission in the monitoring, evaluation and dissemination of the results of measures taken at Union and national level; 
  • advise the Commission on international cooperation
  • provide an overview on Union and national policies
  • foster exchanges of relevant experience, policies and practices between the Member States and the various parties involved.

The expert group was set up by a Commission Decision of 30 July 2013 (2013/C 219/04)  which repealed Decision 2009/872/EC regarding the former European Union committee of experts on rare diseases (EUCERD) .

The members and their representatives to the Commission expert group on rare diseases were appointed by a Decision of 7 January 2014 of the Director General for Health and Consumers following a call for expression of interest.

The group is composed of one representative per Member State, stakeholder organisations and rare diseases experts.