About us

Rare Diseases Denmark is a national alliance of 55 rare disease societies. Rare Diseases Denmark’s work is based on volunteers and a minor professional secretariat. Rare Diseases Denmark was founded in 1985 under the name KMS – The Danish Association for Rare Diseases. Our main tasks are:

  • To advocate the interests of people suffering from rare diseases and work to secure access to relevant diagnostics, care and ressources
  • To establish and disseminate knowledge about living with a rare diseases
  • To be a platform for the member societies.

People living with rare diseases face similar problems. The number of patients for each group are few and the diseases unknown. Consequently, little knowledge and awareness of the diseases have been accumulated – neither in the health care sector nor in the social and educational sectors. In Denmark serious, chronic diseases with a prevalence of less than 2 in 10.000 persons are regarded as rare.

Board of Directors and alternates

List of Member Organizations

Board of Directors


  • Mrs. Gitte Krupsdal, The Danish CHARGE Association
  • Mrs. Hanne Kjeldsen, The Danish NF Association
  • Johnna Jørgensen, The Danish Multiple System Artophy Association 
  • Peder Sørensen, The Danish Porphyria Association

Nordic cooperation

Rare Diseases Denmark is a member of SBONN – Sjældne Brugerorganisationers Nordiske Netværk – Nordic Network of Rare Patient Networks.
Letter of intent SBONN – May 2014

Poster about SBONN – May 2020

In 2022, Rare Diseases Denmark holds the secretariat of SBONN. In september 2022, a Hybrid Workshop is conducted:
Program and details for signing up


Rare Diseases Denmark is a member of the European alliance EURORDIS – RARE DISEASES EUROPE


EUROPLAN National Conference in the framework of the EU Joint Action RD – Final Report (2017)

Rare Family Days – a family empowerment programme targeting families with children with rare disorders (2013)

Further publications (Only available in Danish)

Rare Diseases Denmark
Blekinge Boulevard 2
DK-2630 Taastrup

Phone: +45 3314 0010

Mail: mail@sjaeldnediagnoser.dk