ABOUT US
We are Rare Diseases Sweden
Rare Diseases Sweden is an organisation for people living with rare health conditions. We work to improve conditions for people with rare diseases and their loved ones in Sweden. We do this by advocating for our members’ needs and interests among policymakers and decision-makers.
Our vision is that everyone in Sweden living with a rare health condition, as well as their loved ones, should have access to the best possible care, support and treatment.
We are not a medical organisation and refer medical enquiries to CSD i Samverkan.
Emma's Rare Story
Emma and her son have the rare and hereditary disease XLH. Hear her story on how an entire family is affected when healthcare is lacking.
Cecilia's Rare Story
Cecilia has Apert syndrome and relies on many different contacts and services to coordinate her healthcare and life. As a result, she depends on her mother for support.
Edith's Rare Story
Edith has MPS IV, which means that her bones don't grow as they should. There is a treatment that can extend life expectancy and improve quality of life – but in Sweden, the decision has been made not to treat patients with MPS IV.
National and Regional work
Rare Diseases Sweden, like our member associations, operates almost exclusively at national level. Because each diagnosis affects very few people, there are generally not enough members locally to form local associations. At the same time, healthcare in Sweden is organised at regional level, making it important for us to have a presence and make our voices heard. This is why we have six regional networks, coordinated by our rare disease patient representatives.
Would you like to learn more or get in touch with our regional patient representatives?
Practical information about Rare Diseases Sweden
POSTAL ADDRESS
Rare Diseases Sweden
Box 1386
172 27 Sundbyberg
VISITING ADDRESS
Landsvägen 50 A, floor 4 (to the left of the elevator),
172 63 Sundbyberg
We share entrance with Funktionsrätt Sverige
ORGANISATION NUMBER
802408-4934
BANK TRANSFER
5489-6493
OUR 90 ACCOUNT
90 01 56-1 (plus giro)
900-1561 (bank transfer)
SWISH
123 900 15 61
HRH Crown Princess Victoria
– our patron since 2009
HRH Crown Princess Victoria has been the Patron of Rare Diseases Sweden since 2009. In her role as Patron, the Crown Princess demonstrates her support for the organisation’s work.
“Rare Diseases Sweden highlights the often challenging circumstances faced by people living with rare diseases and their families. The organisation not only provides an important public voice for this group, but also offers a community and a place where people can find advice and support. This is something I feel it is important to draw attention to.”
