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full screen Rare diseases often affect many organs and can mean great care needs. Archive image. Photo: Martina Holmberg/TT
Close to half a million Swedes live with rare health conditions, which often involve complex care needs, and of which ALS and cystic fibrosis are a few examples.
But knowledge is often lacking in healthcare and patients often have to wait a long time to receive the correct diagnosis and treatment.
The government now wants to see a national strategy for diseases and other conditions that are classified as rare. The National Board of Health and Welfare is tasked with drawing up a proposal, according to a government decision.
Among other things, the strategy will create more equal care in the country and draw attention to the needs and challenges that patients with rare diagnoses face in contacts with care.
It is estimated that there are between 6,000 and 8,000 different rare health conditions.