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About rare diseases policies

What is the European policy in the field of rare diseases?

A description of the European policy in the field of rare diseases can be found on the following website:

ec.europa.eu/health-eu/health_problems/rare_diseases/index_en.htm

The programme of Community action in the field of public health (2003-2008)

On September 2002, the European Parliament and the Council adopted a new Community action programme for public health. This programme runs for a 6-year period (from 1 January 2003 to 31 December 2008). The list of funded projects during this programme related to rare diseases can be found on the following website: http://ec.europa.eu/health/ph_programme/programme_en.htm

Programme for Community Action in the Field of Public Health (2008-2013)

Rare diseases are now one of the priorities in the EU Public Health Programme 2008-2013. According to the DG SANCO Work Plans for the implementation of the Public Health Programme, the two main lines of action are the exchange of information via existing European information networks on rare diseases, and the development of strategies and mechanisms for information exchange and co-ordination at EU level to encourage continuity of work and trans-national co-operation.

Furthermore, regarding rare diseases projects, DG SANCO prioritises generalist networks, which centralise information on as many rare diseases as possible - not just a specific group or a single disease - to improve information, monitoring and surveillance.

http://ec.europa.eu/health/programme/policy/2008-2013/index_en.htm

Rare Diseases Task Force

The Rare Diseases Task Force was established in January 2004 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). The RDTF was replaced by the European Union Committee of Experts on Rare Diseases in 2009 (see below).

One of the most notable contributions of the RDTF was its pivotal role between June and October 2007 in drafting the Communication Rare Diseases: Europe's Challenges, in close collaboration with the European Commission. The process ultimately culminated in the adoption of the European Council Recommendation on an Action in the Field of Rare Diseases in June 2009.

More information on the following website: http://www.eucerd.eu/?page_id=45

European Union Committee of Experts on Rare Diseases (EUCERD)

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.

The European Union Committee of Experts on Rare Diseases replaces the European Commission's Rare Diseases Task Force (RDTF).

More information on the following website: www.eucerd.eu

The Research Framework Programmes

Rare diseases are one of the priorities of the calls for proposals for research funding launched by DG Research. DG Research recognises that, whilst rare diseases, by definition, affect far fewer people than common diseases, they can be life-threatening and chronically debilitating conditions and, to date, few drugs have been developed to treat them. The large variety of these diseases - many of which have a genetic basis - means that the research effort in Europe is fragmented. Greater focus should help to realise the benefits of pooling Europe's research resources to tackle such diseases.

The projects funded by FP7 can be found on the following website: http://cordis.europa.eu/fp7/home_en.html

What are the National policies in Europe in the field of rare diseases?

In European Union Member States, national rare disease plans or strategies have to be created by the end of 2013 to respect the Council Recommendation on an Action in the Field of Rare Diseases.

Other countries in Europe seek to follow this dynamic.

The EUCERD Report: 2012 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 2012 gathers all the information in the field, country by country.

State of the elaboration of rare disease national plans across EU Member States - December 2012

What are the policies in other world regions in the field of rare diseases?

The EUCERD Report: 2012 Report on the State of the Art of Rare Diseases Activities in Europe - Part I: Overview of Rare Disease Activities in Europe - July 2012 gives an overview of the Political framework in other world regions apart from Europe : North America (USA, Canada), South America (Argentina, Peru, Columbia), Asia (Japan, Singapore, Taiwan, Korea, China) and Australasia (Australia).

Last update: 06/03/13