Overview of National Rare Disease Policies
The Scientific Secretariat of the EUCERD (EU Committee of Experts on Rare Diseases) publishes on a yearly basis a comprehensive report on initiatives taken and policies adopted for rare diseases at the national and European level:
2013 Report on the State of the Art of Rare Disease Activities in Europe
of the European Union Committee of Experts on Rare Diseases
All the EUCERD members as well as a wide range of stakeholders, including patient organisations, have been consulted to elaborate this report. From research to prevention tools, diagnosis and care, the report presents how European countries and European institutions respond to the rare disease challenge in all relevant fields.
The information provided, although accurate, is not exhaustive and is not an official position of either the European Commission, its Agencies or national health authorities.
The 2013 Report is divided into five parts:
For more information on the role and composition of the EUCERD, please visit the EUCERD website: www.eucerd.eu and read our article.
Page created: 28/02/2012
Page last updated: 30/07/2013
Overview of National Rare Disease Policies
New EUCERD State of the Art report describes national and EU rare disease activities through 2012
The
Scientific Secretariat of the European Union Committee of Experts on
Rare Diseases (EUCERD) under the framework of the EUCERD Joint Action
and with the cooperation and input of the EUCERD members, including
EURORDIS, has released its annual report on the State of the Art of Rare Disease Activities in Europe.
Available online, this extensive report captures
the rare disease and orphan drug activities at both the European Union
(EU) and Member State (MS) levels through the end of 2012.
The five-volume report provides:
- An Overview of Rare Disease Activities in Europe
- Key Developments in the Field of Rare Diseases in Europe in 2012
- European Commission Activities in the Field of Rare Diseases
- European Medicines Agency Activities and other European Activities in the Field of Rare Diseases
-
Activities of European Member States and Other European Countries in the Field of Rare Diseases
Furthermore, the National Resources section
of the EUCERD website offers individual country reports describing the
rare disease/orphan drugs activities for each country and providing key
websites, documents and texts.
The State of the Art report includes a section on
patient organisations as they play an active role in rare disease
policies, projects and research, as well as in raising public awareness
via the international Rare Disease Day. This section provides notably an
overview of EURORDIS, the National Alliances and disease-specific
patient organisations in the field of rare diseases.
The report offers a progress report of the national rare disease plans that the 2009 Council Recommendation on an action in the field of rare diseases urges each EU Member State to develop by the end of 2013. Other
pertinent topics covered in the report include the development of key
rare disease resources, such as the Centres of Expertise; European
Reference Networks, registries; genetic testing facilities; specialised
social services; informational resources; guidelines and
recommendations; orphan medicinal product activity – including
availability, pricing, reimbursement and incentives; education; research
funding and activities at the national and EU levels; and conferences
and events. A selected bibliography gathers together key texts,
documents, websites, and national and EU level sources. The State of the
Art report, useful to stakeholders in all rare disease and orphan
medicine areas, is freely accessible via the EUCERD website.
Louise Taylor, Communications and Development Writer, EURORDIS
Page created: 31/07/2013
Page last updated: 30/07/2013
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