Currently, only a small fraction of rare diseases have codes in international nomenclatures, making it a challenge to trace patients with rare diseases in health information systems on a national and international level. The objective of this action is to support Member states in improving gathering information on rare diseases by implementation of Orphacodes (rare diseases specific codification system). This action should include following activities:
– develop additional necessary rules and guidelines for rare diseases codification;
-support piloting of Orpahacodes implementation in at least four Member States;
-further support cooperation and exchange of experiences between Member States on rare diseases codification.
Applicants participating in a project proposal have to be different legal entities (i.e., independent from each other) from at least 3 countries participating in the Health Programme.