IMMEDIATE RELEASE
2013 REPORT ON THE STATE OF THE ART OF RARE DISEASE ACTIVITIES IN EUROPE
1 September 2013, Paris, France
Each year the Scientific Secretariat of the European Union of Experts on Rare Diseases (EUCERD)
elaborates a comprehensive report covering the state of the art of rare diseases activities at
European and Member State level.
The 2013 Report on the State of the Art of Rare Disease Activities in Europe aims to provide an
informative and descriptive overview of rare disease activities at European Union (EU) and Member
State (MS) level in the field of rare diseases and orphan medicinal products up to the end of 2012.
The report is a valuable resource for the rare disease community and has been met with praise at
both the EU and MS levels for providing valuable insight into understanding the current resources
and activities in the field of rare diseases across Europe that will help determine future strategies to
meet the needs of rare disease patients and their families in Europe and further afield.
The 2013 edition of the report is split into five parts this year:
Part I: Overview of rare disease activities in Europe
Part II: Key developments in the field of rare diseases in 2012
Part III: European Commission activities in the field of rare diseases
Part IV: European Medicines Agency activities and other European activities in the field of rare
diseases
Part V: Activities in EU Member States and other European countries in the field of rare diseases
Part I is a general overview, geared to a more general public, whilst Parts II, III, IV and V provide a
more detailled report of the situation for stakeholders who wish to learn more about the situation at
European or national level. In addition, an individual document for each country covered by the
report, containing the extracted data from the report, have been produced for the first time this year
in order to encourage the dissemination of this information at national level.
The 2013 edition of the report been elaborated with the collaboration of the members of the
EUCERD in concertation with a wide range of stakeholders at national level. This report is a
deliverable of the EUCERD Joint Action (EJA) : Working for Rare Diseases (N° 2011 22 01). All parts of
the report are free to download from www.eucerd.eu.
ABOUT THE EUROPEAN UNION COMMITTEE OF EXPERTS ON RARE DISEASES
The European Union Committee of Experts on Rare Diseases was formally established via the
European Commission Decision of 30 November 2009 (2009/872/EC) . This committee is charged
with aiding the European Commission with the preparation and implementation of Community
activities in the field of rare diseases, in cooperation and consultation with the specialised bodies in
Member States, the relevant European authorities in the fields of research and public health action
and other relevant stakeholders acting in the field. The EUCERD fosters exchanges of relevant
experience,
policies
and
practices
between
these
parties.
Specifically, the EUCERD is charged with the following responsibilities:
assisting the Commission in the monitoring, evaluating and disseminating the results of
measures taken at Community and national level in the field of rare diseases;
contributing to the implementation of Community actions in the field, in particular by
analysing the results and suggesting improvements to the measures taken;
contributing to the preparation of Commission reports on the implementation of the
Commission Communication and the Council Recommendation;
delivering opinions, recommendations or reports to the Commission either at the latter’s
request or on its own initiative;
assisting the Commission in international cooperation on matters relating to rare diseases;
assisting the Commission in drawing up guidelines, recommendations and any other action
defined in the Commission Communication and in the Council Recommendation;
providing an annual report of its activities to the Commission.
The European Union Committee of Experts on Rare Diseases replaces the European Commission’s
Rare Diseases Task Force (RDTF) established via Commission Decision 2004/192/EC of 25 February
2004 on the programme of Community action in the field of public health (2003 to 2008).
FURTHER INFORMATION
EUCERD website : www.eucerd.eu
2013 Report on the State of the Art of Rare Diseases Activities in Europe – Part I: Overview of
Rare Disease Activities in Europe – July 2013
2013 Report on the State of the Art of Rare Diseases Activities in Europe -Part II: Key
developments in the field of rare diseases in Europe in 2012 – July 2013
2013 Report on the State of the Art of Rare Diseases Activities in Europe -Part III: European
Commission activities in the field of rare diseases – July 2013
2013 Report on the State of the Art of Rare Diseases Activities in Europe -Part IV: European
Medicines Agency activities and other European activities in the field of rare diseases - July
2013
2013 Report on the State of the Art of Rare Diseases Activities in Europe -Part V: Activities of
European Member States and other European countries in the field of rare diseases – July
2013
CONTACT INFORMATION
If you have any questions concerning this press release, please contact us:
Charlotte Rodwell, EUCERD Scientific Secretariat
INSERM US14
96 rue Didot
75014 Paris
France
Phone: +33 1 56 53 81 50
Fax: + 33 1 56 53 81 38
[email protected]
www.eucerd.eu
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