During the period January 1, 2012, until December 31, 2018, the non-profit organization Ågrenska* was assigned by the National Board of Health and Welfare to handle the Swedish National Agency for Rare Diseases (NFSD, Nationella Funktionen Sällsynta Diagnoser). The NFSD activities included 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 contributed 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 the future medical provision and health care. Major, far-reaching changes have started in Sweden.