New name: Norwegian Centre for Rare Diseases

The Norwegian Centre for Rare Diseases brings together and continues the national work on rare disorders. We build competence, share knowledge, and support equitable access to diagnosis, treatment, and follow-up care across Norway and in collaboration with European countries.

More than 200 professionals across nine national expertise units contribute to this work. This structure ensures continuity in the national effort while strengthening collaboration across the expertise units.

The centre facilitates activities that support timely and equitable access to specialist services for people with rare disorders. Our knowledge dissemination is primarily directed towards healthcare providers in the health and care sector. At the same time, we offer coordinated and up-to-date information that can also be used by patients, families, and other relevant stakeholders.

Close contact with patients and people living with rare disorders is essential for developing high-quality services. Activities directed towards these groups must be planned, carried out, and documented systematically, and made available so that more people can benefit from the knowledge produced.

The Norwegian Centre for Rare Diseases is organised within Oslo University Hospital. The centre’s leadership is based in the Shared Unit, which is responsible for cross-unit tasks. The Shared Unit is organisationally placed within the Division of Paediatric and Adolescent Medicine at Oslo University Hospital.