Overview of National Rare Disease Policies

Over the past 30 years, people living with a rare disease, their families and other patient advocates have fought to make their voice heard on a national level, as well as on the European political scene. The rare disease community has in turn contributed to the adoption of concrete national measures.

During this time, advocacy actions led by patient organisations and involving many other stakeholders, including academia, healthcare professionals, industry and policy makers, have culminated in two essential policy texts:

  1. The EU Commission’s Communication Rare Diseases: Europe's challenges (11 November, 2008)
  2. The Recommendation of the Council of the European Union on an action in the field of rare diseases (9 June, 2009)

The 2009 Council Recommendation was instrumental in the development of national rare disease plans as it recommended that all EU Member States adopt a national plan or strategy by the end of 2013.

Following the Recommendation, a European Commission Expert Group on Rare Diseases was created, bringing together EU Member State representatives, the EU Commission and representatives from industry, academia and patient organisations. This group supports the Commission in shaping European-specific measures in rare disease policy.

The political landscape for rare diseases has substantially changed across EU Member States over the last five last 10 years, with the adoption of plans and strategies for rare diseases in 24 , EU MS as of October 2017, as compared to only 4 in 2008.

We have also witnessed a spill over effect across the world. From Australia to North America, South America and Asia, many countries are working on a national strategy to improve the lives of people living with a rare disease.

EURORDIS is actively involved in the process of national plan establishment, notably through involvement in the European Project for Rare Diseases National Plans Development (EUROPLAN), which has been embedded in the two EU Joint Action for Rare Diseases. In line with its mission statement, EURORDIS will continue to support progressive measures for patients.

National Plans in Europe

Details of each existing national rare disease plan can be found here:

Overview of Rare Disease Policies

An annual report on the State-of-the-Art of rare disease policies in Europe has been published within the EUCERD Joint Action (March 2012- November 2015) and the EU Joint Action RD-ACTION (June 2015-May 2018).

In the frame of RD-ACTION, the format has been reviewed to provide:

-  a synthesised overview on European rare disease policies;

- country specific data relating to national rare disease policies and activities at the national level.

The production of the State-of-the-Art report on rare diseases includes public authorities, Orphanet national teams as well as National Alliances of patients living with rare diseases.

Discover the new State of the Art report on rare disease policies



State of the Art report on rare disease policies
















Page created: 28/02/2012
Page last updated: 19/12/2018
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