The Swedish definition of a rare disease is a disorder resulting in an extensive disability with a prevalence of no more than 1 in 10 000 inhabitants. The Swedish Medical Products Agency applies the European Regulation on Orphan Medicinal Products definition, a prevalence of no more than 5 in 10 000 inhabitants.
At the end of 2011 National Board of Health and Welfare announced the new Swedish National Agency for Rare Diseases (NFSD - Nationella Funktionen Sällsynta Diagnoser). NFSD started the work in January 2012 and the assignment has been entrusted to the non-profit organization, Ågrenska.* The NFSD activities include the promoting of coherence and coordination of health care resources for people with rare diseases and to accomplish increased coordination with the social insurance, employment services, social services, school and other actors. NFSD also contribute to the dissemination of knowledge and information and to the exchange of good practice and experiences.
The National Board of Health and Welfare submitted a proposal of a National Strategy in the area of rare diseases in November 2012.
*Ågrenska is a national resource and competence center, a meeting place for people with rare diseases, their families and professionals.
www.agrenska.se, (new browser window will open)
Rare diseases – what are they?
Knowledge of rare diseases is lacking in many parts of the world. The consequences of having a rare disease are so wide-reaching that the individual or family requires great reserves of perseverance, knowledge and organizational skills. Changing the situations of people affected by rare diseases requires changes in the wider community. Diagnosis, treatment and care need to be better. Rare diseases are leading the way in future medical provision and health care. Major, far-reaching changes have started in Sweden.