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Sammanfattning

In addition to rarity, which in Denmark is defined by a prevalence of 1:5.000 cases, are rare diseases characterized by being inherent, serious and complex. This means that they show symptoms of a variety of organs, either simultaneously or at different times during the patient's lifetime. To take care of the diagnostic, therapeutic and advisory task for people with rare diseases, two Centres for Rare Diseases were set up in 1996 at the Aarhus University Hospital and Rigshospitalet. Not allocated to these Centres are those rare diseases (such as Fenylketonuri and Cystic Fibrosis) which already have a treatment location and the 100 rare mono organ diseases/disease groups, which based solely on their low frequency and complexity, by the National Board of Health ("Sundhedsstyrelsen"), are classified in as highly-specialized functions at the Danish University Hospitals. In July 2014 the National Board of Health released a "National Strategy for Rare Diseases", in which discussions and recommendations for a comprehensive and coherent development on the field of Rare Diseases are described. The strategy is however not an action plan, and therefore does not provide patients with rare diseases specific right unlike patients with cancer and cardiovascular diseases, who have it through "cancer packages" and "cardiac packages". It contains recommendations that can easily be translated into concrete initiatives for actual action. The contents of the strategy are briefly described.

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