EU Launches Five-Year Rare Disease Action Program

The European Commission has launched a five-year action program on rarediseases with three aims: improved information on rare diseases, improved support for sufferers; and ensuring efficient handling of the clusters or outbreaks characteristic of rare diseases.

The Commission says that action at European Union level is of particular value because the size of the population of the EU means that the low incidence in individual member states can be aggregated to form a much larger group sharing the same characteristics. It adds that rare diseases are of such low prevalence (five or less per 10,000 of population) that special efforts are required for effective handling.

Sources of detection, recognition and medical care are limited or even non-existent, and little or nothing is available for effective prevention or treatment. The Commission notes that this action is in line with current EU activity in biomedical research, and with work on the development and marketing of orphan drugs used for the treatment of rare diseases where the commercial return is insufficient.