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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 will foster 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 Committee may establish temporary Working Groups consisting of external experts for specific missions.
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).
Members
The Committee has 51 members, nominated following specific calls for expression of interest. This includes:
- 1 representative of each of the 27 European Union Member states;
- 4 representatives of patient organisations;
- 4 representatives from the pharmaceutical industry;
- 9 representatives of ongoing and/or past Community projects in the field of RD financed by programmes of Community action in the field of health (including 3 representatives of existing pilot networks of European Reference Networks);
- 6 representatives of ongoing and/or past RD projects financed by the Community Framework Programmes for Research and Technological Development;
- Representatives of DG Sanco, DG Research, DG Enterprise and Eurostat;
- 1 representative of the European Centre for Disease Prevention and Control (ECDC).
These representatives are allowed alternates.
Representatives from the European Medicines Agency, as well as the Chair or Vice-Chair of the COMP may attend. EFTA states party to the Agreement of the European Economic Area can also request representation.
It is also possible to grant representatives of international or professional organisations acting in the field of rare diseases making duly substantiated requests to the Committee observer status.
Consult the list of national representatives.
Consult the list of interest groups' representatives designated by the Commission Decision 201/C204/02.
Scientific Secretariat
A DG Sanco Joint Action (N°2008 22 91) is in place since 1 January 2009 to support the activities of the Scientific Secretariat of the European Union Committee of Experts on Rare Diseases (previously the Rare Diseases Task Force) and to contribute to the revision of the International Classification of Diseases in the field of Rare Diseases.
OBJECTIVES OF THE JOINT ACTION
The objective of this joint action is to promote action on the prevention of rare diseases (RD) and to provide analysis and technical assistance in support of the development or implementation of a policy in the area of RD and orphan drugs (OD).
This includes:
- scientific support for the activities of the EUCERD by identifying existing documentable indicators that are relevant to RD and collecting data on a yearly basis;
- disseminating political and scientific information to all stakeholders through ad-hoc reports and an electronic newsletter, including information on national and EU incentives;
- liaising between EU agencies and services and major stakeholders to enhance collaboration and maximise input and outcomes;
- providing assistance to the EUCERD on other scientific issues that may be identified in the course of the project.
The objective is also to improve the traceability of RD in health information systems by:
- assigning International Classification of Diseases codes (ICD10) to all RD;
- proposing changes to improve the classification in view to the future adoption of the ICD11;
- using the technical platform developed by the WHO and with the assistance of an international expert group that will be established;
- cross-referencing with other classification systems such as MedDRA and SNOMED-CT
This information will be posted on the Orphanet website, in a format adapted to the needs of the information system community to maximise its use.
Ad-hoc workshops are supported by the Scientific Secretariat, reflecting identified priorities in the field. Workshops have been organised around the topics of Coding and Classification of Rare Diseases, Public Health Indicators for Rare Diseases and the Initiatives and Incentives in the field of Rare Diseases.
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