Czech National Rare Disease Plan 2012-2014 officially adopted!
On 9 June, 2009, the European Council adopted the Recommendation on an Action in the Field of Rare Diseases, calling on each European Union (EU) Member State (MS) to elaborate and adopt a strategy for their rare disease patients by the end of 2013. The Council Recommendation defines seven strategic areas for rare disease care, of which the first - Plans and strategies in the field of rare diseases – urges the MS to develop actions that encompass the elements of the following strategic areas: Adequate definition, codification and inventorying of rare diseases; Research; Centres of expertise and European reference networks; Gathering expertise on rare diseases at European level; Empowerment of patient organisations; and Sustainability.
A ten-year Czech National Strategy for Rare Diseases was approved by the Czech government in 2010 for the country's rare disease patients, estimated to be roughly 20,000 out of 10.5 million habitants. The Czech strategy outlines existing efforts and proposes major targets and measures for improving the situation in the Czech Republic, to be subsequently specified in more detail in the context of a three-year national action plan that establishes sub-tasks, instruments, responsibilities, dates and indicators for fulfilling individual tasks.
On 29 August, the Czech government adopted via Decree 633 the Czech National Plan for Rare Diseases for 2012-2014, which delineates actions identified in the 2010-2020 Czech National Strategy. Specific areas include: Improving information; Education; Prevention; Improving screening and diagnosis; Improving the availability and quality of care; Improving quality of life and social inclusion; Support for rare disease science and research; Unification and development of data collection and rare disease biological samples; Supporting and strengthening patient organisations; Interdepartmental and interdisciplinary collaboration; and International cooperation. Only available in Czech language for the moment, a request has been made to translate the Czech National Plan for Rare Diseases for 2012-2014 and make it available on the website of the European Commission DG Health & Consumers Public Health Rare Diseases section, which includes a section specifically for the EU national plans for rare diseases.