Rare Disorders Denmark defines “rare diseases” as serious chronic disorders with a prevalence of less than 2 in 10.000 persons. (That is, less than 1000 persons in Denmark).
People suffering from rare diseases typically require life long treatment and care. In addition, their lives are complicated by the fact that little knowledge of the diseases has been accumulated – neither in the health care sectors nor in the social and educational sectors.
In Denmark two national treatment centres have been established. They are responsible not only for specialised patient treatment, but also for quality development, research, clinical databases and developing national guidelines for the treatment for rare disorders.
The Danish Centre for Rare Diseases and Disabilities is a national knowledge centre on rare disorders. The centre gathers, processes and disseminates information on rare diseases and disabilities, and it also offers counselling to patients as well as professionals on social problems linked to rare diseases.