Norwegian Centre for Rare Disorders

 

Our knowledge dissemination is primarily directed towards service providers in the health and care sector. At the same time, the Centre provides information that can also be used by patients, families and other relevant stakeholders.

We develop expertise in close dialogue with users, patients and families. Through systematic engagement, the Centre gathers and documents experiences to improve services and clinical practice.

The Norwegian Centre for Rare Diseases is organised within the Oslo University Hospital. The central unit is located within the Division of Paediatric and Adolescent Medicine and is responsible for coordination, management and cross-unit functions. The remaining expert units are based within various health trusts and one foundation. These units are responsible for specific diseases and disease groups and provide specialised expertise at a national level.

The Centre’s mandate came into force on 1 January 2025, following the discontinuation of the former National Advisory Unit for Rare Diseases (NKSD). The regional health authorities issue the mandate on behalf of the Ministry of Health and Care Services. It sets out the purpose, target groups, organisation, governance, funding and priority areas for the Centre’s activities, and defines the framework for its role as a national resource in the further development of the rare disease field.

We collaborate with relevant professional and expert communities both nationally and internationally. These collaborations are established to strengthen competence development, coordination and knowledge sharing within the rare disease field, and connect the Centre to environments with specialised expertise across different disease areas.