The National Advisory Unit on Rare Disorders (NKSD) is a national service that coordinates competence in the field of rare disorders in Norway. NKSD is seated at Oslo University Hospital, the Division of Paediatric and Adolescent Medicine, located at the Ullevål Campus.
NKSD aims to establish a better quality of services through measures such as:
- empowering patients and strengthening advocacy
- ensure greater visibility for rare disorders in society
- providing easier access to services
- strengthening networks and collaborations of professionals
- working towards more efficient use of resources
- distributing knowledge
- monitoring and spread of information on treatment
- participation in research and research networks
- facilitation and involvement in relevant ERNs
- education of professionals, patients, organisations and the general public
- providing guidance and advice for public services, and annual reports to governmental bodies
- ensuring equal access to services for people with rare disorders across geographical distance, socio-economic status, age, gender and background
- implementing national guidelines and evidence-based knowledge
- establishing professional advisory boards and committees
Orphanet - the Norwegian contribution
Orphanet is an international, unique resource gathering and improving knowledge on rare diseases to improve the diagnosis, care and treatment of patients with rare diseases. The Norwegian National Advisory Unit on Rare Disorders contributes to updating the database with relevant information. NKSD also aims to use Orphanet in Norways' health, case record and research information systems.
NKSD has established a national Orphanet hub which supports the use and implementation of ORPHAcodes and the Orphanet nomenclature in Norway.
The Orphanet organisation and its database were established in France by the INSERM (French National Institute for Health and Medical Research) in 1997. This initiative became a European endeavour in 2000, supported by grants from the European Commission. Orphanet has since, gradually grown to a Consortium of 40 countries, within Europe and across the globe.
Orphanet aims to provide high-quality information on rare diseases and ensure equal access to knowledge for all stakeholders.
Orphanet also maintains the Orphanet rare disease nomenclature (ORPHAnumber), which is essential in improving the visibility of rare diseases in health and research information systems.
Norwegian Registry on Rare Disorders
NKSD operates the Norwegian Registry on Rare Disorders - Sjeldenregisteret.no. Diagnosing the patients with ORPHAcodes is a prerequisite for reporting the patients to the registry.
European reference networks for rare diagnoses - ERN
Norway is, together with Great Britain, the only non-member state contributing to the European Reference Networks for Rare and Low Prevalence Complex Diseases (ERN).
European reference networks for rare diagnoses - ERN is a collaboration established to improve access to diagnostics, treatment and other high-quality healthcare services for patients with rare diagnoses. ERN aims to tackle complex or rare diseases and conditions requiring highly specialised treatment and a concentration of knowledge and resources.
Registration of rare diagnoses is an integral part of the ERN collaboration, aiming to use ORPHA codes in all registers.
NKSD has for many years contributed with assistance and facilitation in the proscess towards the memerships. In 2021, Norway became a member of 17 out of 24 ERNs, involving 25 European countries, with over 300 hospitals and 900 healthcare units, covering all major disease groups.
Helpline and ultra-rare disorders
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Oslo University Hosptial
Ullevål, Kirkeveien 166, Oslo
Building 31B, 1. floor
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Nasjonal kompetansetjeneste for sjeldne diagnoser
Oslo universitetssykehus HF
Postboks 4950 Nydalen