About Rarelink and NCRD

Nordic Conference on Rare Diseases (NCRD)

What is Rarelink?

Rarelink provides a website with descriptions of rare diseases in Nordic languages. Rarelink arranges conferences and meetings in order to strengthen cooperation among important stakeholders in the field – both people from the health sector, the social sector, the educational sector and the patients themselves. One aim is to build capacity among stakeholders in order to meet the needs in the Nordic area.

Rarelink has 5 countries represented with different representation:

  • Norway:
  • Sweden: National Competence Centre for Rare Diseases – Ågrenska
  • Denmark: National Board of Social Services
  • Finland: The Finnish network for Rare Diseases
  • Iceland: State Diagnostic and Counseling Centre

Rarelink is steered by a Steering Committee. Each country has one representative in the steering committee. The steering committee has 2 physical meetings and two videoconferences pr. year.
Rarelink also have a working group – called the Diagnosis group. It consists of members, who deal with the link-collection on the website.

If you want to contact Rarelink or NCRD, you can email:

Finland: Kristina Franck
Iceland: Ingolfur Einarsson
Sweden: Robert Hejdenberg

Webmaster: Kari Hagen

Read more about the Rarelink history