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Public Health (15-09-2015)

Rare Diseases Joint Action gets started

Today, a new Joint Action addressing rare diseases kicks off at a meeting in Luxembourg.

The Joint Action is co-financed by the EU Health Programme. All Member States are involved via an associated or collaborative partner. Norway and Iceland also nominated their representative, as did Georgia, Armenia and Australia, giving the project a global as well as a European perspective. The Joint Action will run until the end of May 2018.

Its general objectives are:

  • To support the further development and sustainability of the Orphanet database on rare diseases. This database is the biggest repository of information about rare diseases globally, and is run by a large consortium of European partners;
  • To contribute to solutions to ensure an appropriate codification of rare diseases in health information systems; and
  • To continue implementation of the priorities identified in the 2009 Council Recommendation and the 2008 Commission Communication on Rare Diseases, and to support the work of the Commission Expert Group on Rare Diseases by gathering expertise and producing data necessary to its action.

In the EU, any disease affecting fewer than 5 people in 10 000 is considered rare. There are an estimated 5-8000 distinct rare diseases. Taken together, they affect 6-8% of the EU population – between 27 and 36 million people.

Over the years the Commission has supported key actions to produce data necessary to improve identification and knowledge on rare diseases, and has provided recommendations on specific areas to support and guide Member States policies on rare diseases.

Part of the EU’s comprehensive approach to tackling the rare diseases burden in Europe is to co-finance projects and actions, carried out by Member States, through the Health Programme.