As 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. 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. 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. 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.
