National Advisory Unit on Rare Disorders

The National Advisory Unit on Rare Disorders in Norway is a governmental entity with a national responsibility to provide patients, medical health professionals and the general public with updated information on rare diseases.

Back row: SA Aksnes (general director), S Lysne (learning), L Martinsen (international), ACS Wathne (MD), ST Vollan (communication). Front: LG Bjørnstad (registry), E Bækken (learning), L Egenberg (help line), RT Skarberg (empowerment).

Our vision is to make rare disorders more known through knowledge and collaboration. Norwegian website.

Logo NKSD

Our logo - please contact stavol@ous-hf.no for hig res. versions

Main objectives

NKSD aims to establish better quality of services through

  • Empowering patients and strengthening advocacy. 
  • Making rare disorders more visible in today’s society.
  • Ensuring easier access to services.
  • Strengthening networks and collaborations of professionals.
  • Working towards more efficient use of resources.
  • To build and distribute knowledge.
  • Monitor and spread information on treatment.
  • Participate in research and research networks.
  • Facilitate participation in relevant ERNs.
  • Educate professionals, patients, organizations and the general public.
  • Provide guidance and advice for main public services, and to report anually to governmental bodies.
  • Ensure equal access to services for people with rare disorders across geographical distance, socio-economic status, age, gender and background.
  • Implement national guidelines and evidence based knowledge.
  • Establish professional advisory boards and comitees.

Orphanet - the Norwegian contribution

Orphanet is an international, unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. 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), essential in improving the visibility of rare diseases in health and research information systems.

The Norwegian National Advisory Unit on Rare Disorders contributes by updating the database with relevant information. NKSD also aims to make use of Orphanet in Norways' health, case record and research information systems.

Orphanet was established in France by the INSERM (French National Institute for Health and Medical Research) in 1997.This initiative became a European endeavour from 2000, supported by grants from the European Commission: Orphanet has gradually grown to a Consortium of 40 countries, within Europe and across the globe.

Further information on Orpha.net - Norwegian


European Reference Networks - ERN

Norway and Great Britain is the only non-member states contributing to the European Reference Networks for Rare and Low Prevalence Complex Diseases (ERN). These are virtual networks involving healthcare providers across Europe.

Oslo University Hospital, eg the Division of Paedriatic an Adolesecent Medicine has a national responsibility for ERN in Norway. The Norwegian National Advisory Unit on Rare Disorders is organised in the very same division in Oslo, and plays an important role for the Norwegian contribution toghetter with researchers and treaters all over Norway.

They aim of ERN is to tackle complex or rare diseases and conditions that require highly specialised treatment and a concentration of knowledge and resources. There are 24 ERNS involving 25 European countries included Norway, over 300 hospitals with over 900 healthcare units and covering all major disease groups. 

Further information about the European Reference Networks

Helpline and ultra rare disorders

People with a rare disorder outside the groups provided for by the centers can contact NKSD for help and advice, e.g. through our National Helpline for Rare Disorders +47 800 41 710.

Nine Norwegian centers on rare diseases

NKSD consist of nine national "Centres of Expertise" on rare disorders where patients, their families and professionals can seek help and advice. 

Most centres, each responsible for specific disorders, accept inquiries without a physician’s referral.

Contact us

Visiting adress:

Oslo University Hosptial
Ullevål, Kirkeveien 166, Oslo
Building 31B, 1. floor
(accessible also by elevator)

Google Map -link

Call us or send us an email

Office: +47 23 02 69 76 Opening hours: Monday - Friday: 08.30 am -15.30 pm. E-mail: sjeldne-diagnoser@ous-hf.no

Social media

Postal adress

Nasjonal kompetansetjeneste for sjeldne diagnoser
Oslo universitetssykehus HF
Postboks 4950 Nydalen
NO-0424 OSLO
NORWAY

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