About us

Rare Diseases Denmark is a national alliance of 57 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.

List of Member Organizations

Board of Directors

President: Mrs. Birthe Byskov Holm, The Osteogenesis Imperfecta Society of Denmark bbh@sjaeldnediagnoser.dk
Vicepresident: Mrs. Liselotte Wesley Andersen, The Danish Tuberous Sclerosis Association lwa@sjaeldnediagnoser.dk
Treasurer: Mr. Preben Sindt, The Danish Rett Syndrome Association prs@sjaeldnediagnoser.dk
Ms. Mia Maria Rosendahl Hansen, The Danish Association for Williams Syndrome mh@sjaeldnediagnoser.dk
Mr. Thorkild Petersen, Alfa-1 Denmark trp@sjaeldnediagnoser.dk

Alternates

Mr. Søren Lildal, The Danish Apert Association sl@sjaeldnediagnoser.dk
Ms. Annika Dybdal, The Danish Protein Degradation Defect Association ad@sjaeldnediagnoser.dk
Ms. Jane Villemoes, The Danish Angelman Organisation jv@sjaeldnediagnoser.dk
Mr. Mark Lindberg, The Danish Tourette Association ml@sjaeldnediagnoser.dk

Nordic cooperation

Rare Diseases Denmark is a member of the Rare Diseases Nordic Network.
Letter of intent nordic – may 2014

Europe

Rare Diseases Denmark is a member of the European alliance EURORDIS

Publications

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)

Contact
Rare Diseases Denmark
Blekinge Boulevard 2
DK-2630 Taastrup

Phone: +45 3314 0010

Mail: mail@sjaeldnediagnoser.dk