All the activities are carried out within 9 Thematic Working Groups. Each WG has two leaders in charge to manage and coordinate the WG scientific activities. Patient representatives are present in each WG and work together with the experts.

WG1 Diagnostic Challenge

WG2 Research

WG3 Good Practice & Guidelines

WG4 Clinical Trials

WG5 Database: Natural History of Diseases

WG6 Interactions with Other ERNs

WG7 Multidisciplinary Care -eHealth Tools

WG8 Education and Training

WG9 Visibility towards patients and HCPs