The governance of the ERN-Skin is thought to ensure maximum geographical and target groups representativity and outreach across the EU. Coordinators, elected by the ERN-Skin board which administrates the network, are responsible for the day-to-day management of the ERN-Skin and guarantee effective communication and cooperation within the network.
56 reference centres located in 18 different European countries cooperate within the ERN-Skin. Each of them is represented by an Official Representative who has the capacity to decide and act in the name of the centre.
The wide range of rare skin disorders are covered by 9 thematic groups coordinated by one or more chairs. They are supplemented by sub-thematic and transversal groups aiming to create synergy between them.
The Patient representative Council includes patient representatives in all structures of the ERN who help ensure that the activities of the network reflect the actual needs of patients. They are key pieces of the structure, for they convey the concerns, wishes or suggestions of patients treated by the members of the ERN-Skin.