Norwegian Centre for Rare Diseases
The Norwegian Centre for Rare Diseases builds competence and disseminates knowledge on rare diseases. The centre consists of nine national units, each contributing specialised competence within the rare disease field.
The Norwegian Centre for Rare Diseases builds competence and disseminates knowledge on rare diseases. The centre consists of wight national expertise units, each contributing specialised knowledge within the rare disease field.
The centre’s activities support equitable and timely access to assessment, diagnosis, treatment, and follow-up care within specialist health services.
Knowledge dissemination is primarily directed towards healthcare providers in the health and care sector. At the same time, the centre provides coordinated and up-to-date information for patients, families, and other relevant stakeholders.
Development of knowledge and practice takes place in close dialogue with users, patients, and families. Experiences are systematically collected and documented, and used to improve services and clinical practice.
The Norwegian Centre for Rare Diseases is organised within Oslo University Hospital. The Shared Unit, located within the Division of Paediatric and Adolescent Medicine, is responsible for coordination, leadership, and cross-unit tasks. The other units are based at different health trusts and one foundation, and are responsible for specific diseases and disease groups.
The centre collaborates with relevant professional environments nationally and internationally to strengthen knowledge development, coordination, and knowledge sharing in the rare disease field.