A reference centre comprises a highly specialized hospital team with proven expertise in a group of rare diseases. Its activities include the fields of care, education and training, and research. The team is essentially medical, but also includes paramedical, psychological, medical social workers, educators and other social professionals.

The reference centre ensures care management for patients in its local catchment area, but also an outreach service extending to regional, national, European and even international locations.

The reference centre may be linked with constituent centres, to ensure a collegial approach to its work. Constituent centres are designated when they meet at least one of the following conditions:

• Coordinate care, research or training for patients being treated by the reference centre
• Provide paediatric or adult patients with ancillary care in addition to that offered by the coordinating site
• Perform similar functions to the reference centre, but primarily devoted to the diversity of rare diseases occurring within its own territorial network.

A competence centre provides care and follow-up for people with rare diseases as close as possible to their homes. Its activity is linked to the reference centre. It brings together a specialized hospital team with proven expertise in a group of rare diseases. It liaises with hospital or other health professionals and with the medico-social, educational and social sectors located within the designated area.

A competence centre is encouraged to participate in education, training and research for rare diseases falling within its area of expertise.