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As the end of 2013 approaches, what is the status of EU national rare disease plans?

December 2013

Jigsaw puzzle of EU flagsAs 2013 draws to a close, EU countries are busy formulating, adopting, implementing, or renewing their strategies for providing care and services to rare disease patients as urged via the Council Recommendation of 8 June 2009 on an action in the field of rare diseases.

On 22 November 2013, the United Kingdom Department of Health released the UK Strategy for Rare Diseases, targeting five key areas: Empowering those affected by rare diseases; Identifying and preventing rare diseases; Diagnosis and early intervention; Coordination of care; and Research. The strategy presents a blueprint allowing the four UK countries (England, Scotland, Wales, and Northern Ireland) to create and harmonise their plans, which are due to be published at the end of February 2014. In parallel with the launch of the UK Rare Diseases Strategy, a Rare Diseases Translational Research Collaboration (TRC) is being established in the UK, with a four-year investment of £20 million.

In the Netherlands, the Ministry of Health adopted the final version of the Dutch National Plan for Rare Diseases on 10 October 2013. Stakeholders gathered in mid-November for a EUROPLAN National Conference appropriately entitled “And Now?”, featuring results-oriented workshops on areas of the Dutch plan that require further clarification, as well as existing bottlenecks. The event focused on the main areas of the national plan, including: Implementation; European cooperation; Diagnosis and research; Quality of life; Strengthening the patients’ voice; Centres of Expertise; and Access to medicines.

The European Project for Rare Diseases National Plans Development (EUROPLAN), through the EUCERD Joint Action, helps countries define their rare disease priorities and undertake the process of elaborating a national strategy involving all relevant stakeholders. The EURORDIS National Rare Disease Policy website section and the EUROPLAN website contain documents – including content guidelines, national conference details, consultation results, concept papers, draft strategies, and published plans – from over two-thirds of the 28 EU Member States in response to the Council Recommendation, and more are expected in coming months. The European Commission is due to issue a report in early 2014 on the status of the implementation of the Council Recommendation based on a survey of EU Member States.

“It is too soon to assess the quality of the policy measures and actions taken through the national rare disease plans as well as to have an informed opinion on the robustness of the budgetary approach embedded into these plans for their full impact and sustainability. However, we can already praise the overall dynamic which is real and well-coordinated across Europe. We are moving toward an integrated EU-national strategy, comprehensive from research to care, focused on a few essential building blocks such as information, centres of expertise, registries, and access to medicines,” declares Yann Le Cam, Chief Executive of EURORDIS and Vice-Chair of the EU Committee of Experts on Rare Diseases. “In coming years, the Committee of Experts on Rare Diseases, involving all EU Member States and observer countries, will play a leading role hand-in-hand with the European Commission to pursue efforts in the right direction. And EURORDIS will be vigilant and supportive to make sure future developments address patients’ and families’ needs.”

One welcome bonus of the European Union call and momentum to develop national strategies on rare diseases is that its message has spread beyond the European Union with countries in Europe such as Georgia, Norway, Serbia and Russia, and countries around the world such as Australia, Brazil, and Canada, drafting strategies responding to the needs of their people living with a rare disease.

For more information, you can also refer to the most recent version (July 2013) of the excellent annual EUCERD Reports on the State of the Art of Rare Diseases Activities in Europe.

Louise Taylor, Communications and Development Writer, EURORDIS