Læs denne hjemmesides tekst på dansk (Read this page in Danish)
The first Danish Strategy for Rare Disease was published by the Danish Health Authority in 2014.
A working group consisting of relevant stakeholders from healthcare, social services, authorities and patient organisations, including representatives from Rare Diseases Denmark (the Danish Rare Disease Patients Alliance), contributed to drafting the Strategy. The working group was later established as a Monitoring group, preparing an action-oriented status report for the national strategy. The report was published by the Danish Health Authority in October 2018.
The National Strategy for Rare Diseases was scheduled for evaluation in 2020/2021, but the process was delayed due to the COVID-19 pandemic. In June 2022, Rare Diseases Denmark hosted a satellite workshop during the European Conference on Rare Diseases (27 June–1 July). At this event, the Danish Health Authority announced that an external evaluation of the strategy was expected in the second half of 2022. Marselisborg Consulting conducted the evaluation of the National Strategy, which was discussed at a meeting of the strategy’s Monitoring group in February 2023. All stakeholder groups represented in the Monitoring Group contributed to the evaluation.
As of 2024, a new and expanded Monitoring group has been established by the Danish Health Authority to oversee the implementation of the national strategy. Rare Diseases Denmark is represented in this group by Chairperson Liselotte Wesley Andersen and Director Lene Jensen.
Key highlights of the Danish Rare Disease Strategy
Reliable and validated information on rare diseases in Denmark
The following sources are central and highlighted in the national strategy:
- 300 rare diseases are described in the Lægehåndbogen (The Medical Handbook) used by general practitioners, social counsellors, other relevant professionals, and patients, relatives and caregivers.
- The Danish Authority of Social Services and Housing is an important knowledge holder regarding rare handicaps and more. A dedicated website is available here
- A number of sources and information is available at the Knowledge Hub in-the-making on Rare Diseases Denmark’s website
Expert advice
The two Centres for Rare Diseases (CSS) at the University Hospitals of Copenhagen and Aarhus deliver advice to professionals in health care and social services:
Danish expert centres participate in all 24 European Reference Networks for rare diseases and rare cancers.
As regards counselling for patients and relatives, Rare Diseases Denmark runs a national helpline, accredited by the standards of the Quality Organization Advisory Denmark.
National rare disease healthcare pathways
This is a vital focus point of the National Strategy. A Generic Care Pathway Model for Rare Diseases is under completion by the Danish National Health Authority, based on the work of a group consisting of relevant stakeholders, including a representative from Rare Diseases Denmark (2020 –2022). The model is presumably in need of an update following a national healthcare structural reform to be implemented in 2025 and beyond.
National registry
Only one registry across rare diagnosis exists in Denmark: RAREDIS
The future for this registry is uncertain.
Scientific research
There are no specific research programmes for rare diseases in Denmark.
EU-level research and funding is coordinated through the ERDERA project.
The role of Rare Diseases Denmark
Rare Diseases Denmark is highly involved in the implementation of the National Strategy for Rare Diseases. The 2009 Recommendation of the EU Council of health ministers to the member states to develop national strategies or action plans for rare diseases, led to the adoption of the first Danish Rare Diseases Strategy.
Rare Diseases Denmark is also a driving force in the constitution of the Monitoring group and the work of this group.
Relevant resources
- Denmark_RD National Strategy_2014_Danish
- Denmark_RD National Strategy_Evaluation&Recommendations_2018_Danish
- Denmark_RD_National_Strategy_Full_evaluation_Dec_2022_Danish
- Denmark_RD_National_Strategy_Full_evaluation_SUMMARY_Dec_2022_English
National contact
Sjaeldne Diagnoser
Rare Diseases Denmark
http://www.sjaeldnediagnoser.dk/
mail@sjaeldnediagnoser.dk