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DM: It has changed a lot in terms of EU public health actions as well as in research. Since 2008 rare diseases are a priority area for action in Public Health Programmes. Considering rare diseases as a whole, and not singularly, helped highlighting and recognizing a series of healthcare problems and planning focused public health actions involving groups of population with common needs, safeguarding at the same time their peculiarities and differences. Communication of the European Commission “Rare Diseases: Europe’s challenge” and “Council Recommendation on a European action in the field of rare diseases” allowed common policy guidelines to be shared everywhere in Europe. The adoption of the Commission Communication (2008), and of the Council Recommendation (2009), and the Directive on Cross-border healthcare have created an operational framework to act in the field of rare disease with European coordination in several areas (national plans o strategies, classification and codification, European Reference Networks, orphan drugs, European Committee of Experts, etc.). Many Countries adopted actions to tackle rare diseases in order to improve prevention, early diagnosis and appropriate treatments. In the field of research the EU Commission has launched many initiatives starting with the different Framework programs (FP) where many projects on rare diseases have been funded to last international initiative the International Rare Diseases Research Consortium (IRDiRC). Maximising scarce resources and coordinating research efforts are key elements for success in the rare diseases field. Worldwide sharing of information, data and samples to boost research is currently hampered by the absence of an exhaustive rare disease classification, standard terms of reference and common ontologies, as well as harmonized regulatory requirements. In conclusion, it is no doubt that EU integration and cohesion policies have greatly contributed to make rare diseases issues more visible and more comprehensible throughout Europe.
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