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.
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
- Mr. John Gerbild, The Association for Ataxia/HSP jg@sjaeldnediagnoser.dk
- Mr. Thorkild Petersen, Alfa-1 Denmark trp@sjaeldnediagnoser.dk
Alternates
- 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
In 2022, Rare Diseases Denmark holds the secretariat of SBONN. In september 2022, a Hybrid Workshop is conducted:
Program and details for signing up
Europe
Rare Diseases Denmark is a member of the European alliance EURORDIS – RARE DISEASES EUROPE
Publications
EUROPLAN National Conference in the framework of the EU Joint Action RD – Final Report (2017)
Further publications (Only available in Danish)
Contact
Rare Diseases Denmark
Blekinge Boulevard 2
DK-2630 Taastrup
Phone: +45 3314 0010
Mail: mail@sjaeldnediagnoser.dk