Rare diseases Sweden is a national association representing over 70 rare diseases patient organizations with over 16 000 members. We are the voice of people affected by rare diseases in Sweden.
Rare Diseases Sweden was founded in 1998 and has steadily grown in size and success, making rare diseases increasingly known. We work diligently to spread awareness, influence political decision making and improve healthcare for people living with rare diseases.
A rare disease is any disease that affects a small percentage of the population, is often of genetic origin, and is present throughout a person’s life although symptoms may appear later in life. In Europe, a disease is defined as rare when it affects less than 1 in 2000 citizens. In Sweden, the definition of a rare disease is defined as rare when it affects 1 in 10 000 individuals.
While a disease in itself can be rare, there is an estimated total of over 7000 rare diseases. In Sweden, it has been estimated that rare diseases represent 5% of the population making it just as prevalent as some of our most known diseases.
Rare diseases are characterized by a diversity of signs and symptoms. As such, living with a rare disease often involves a set of complex needs for support and treatment throughout the lifespan. The public healthcare system often fails to provide the adequate quality of care. This has tremendous impact on the quality of life, not only for the person diagnosed with a rare disease, but also their families, friends, caretakers, and society.
Rare Diseases Sweden works continuously to influence politicians, healthcare providers, and stakeholders in an effort to promote a well-functioning healthcare system for rare diseases.Our main mission is to push for the further development of centers of expertise with focused and coordinated specialist care for rare diseases.
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Bransch
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Ideell organisationsförvaltning
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Företagsstorlek
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2–10 anställda
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Huvudkontor
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Sundbyberg
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Typ
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Ideell organisation
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Grundat
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1998
