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Summaries of EU Legislation

Rare diseases — improving care and quality of life

Date of last review:
01/12/2016
Initial creation date:
11/06/2010
Summary code:
  • 29.09.05.00 Rare diseases
EUROVOC descriptor:
Directory code:
Summarised document(s):
Author:
Publications Office of the European Union
Responsible entity(ies):
Publications Office of the European Union

Rare diseases — improving care and quality of life

SUMMARY OF:

Recommendation (2009/C 151/02) – action in the field of rare diseases

WHAT IS THE AIM OF THE RECOMMENDATION?

The 2009 recommendation from European Union (EU) countries on diagnosing, treating and caring for sufferers followed on from an EU strategy on rare diseases adopted in 2008.

KEY POINTS

  • National plans and strategies: the EUCERD joint action programme (March 2012 to August 2015) supports EU governments in developing national strategies. By early 2014, 16 had national plans in place (compared to only four in 2008) and seven others were well advanced.
  • Definition and codification: for EU purposes, a rare disease affects no more than 5 per 10,000 persons. The EU has established a database, Orphanet, which links together over 6,000 diseases and operates in 7 languages. By the end of 2013, it had identified 2,512 specific rare diseases patient organisations.
  • Research: the EU has funded almost 120 collaborative research projects with a total budget of over €620 million. In early 2011, it launched the International Rare Diseases Research Consortium (IRDiRC). This aims to deliver 200 new therapies by 2020. It supports the creation of patient registries and databases and is developing a European platform on rare diseases registration.
  • Centres of expertise: the EU-co-funded 4-year rare diseases best practices project (January 2013-December 2016) is helping develop standards and procedures for clinical practice guidelines. In 2013 an expert group was created to advise the Commission.

The 2014 report presents an overview of the implementation of the rare diseases strategy to date. This focuses on improving the recognition and visibility of rare diseases, measures to help EU countries address the phenomenon and moves to develop wider EU-level cooperation, coordination and regulation.

BACKGROUND

  • Some 5,000 to 8,000 rare diseases exist, affecting between 27 and 36 million people in the EU. The patients, because in national terms their numbers are relatively limited, often spend years waiting for a diagnosis. The EU and cooperation between EU countries can make a difference by pooling knowledge, expertise, research and Europe-wide authorisation for the best possible medicines.
  • For more information, see:

MAIN DOCUMENT

Council Recommendation of on an action in the field of rare diseases (2009/C 151/02) (OJ C 151, , pp. 7-10)

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