Welcome to Rare Diseases Sweden.
Rare Diseases Sweden works to improve conditions for people living with rare health conditions and their families in Sweden.
Our main mission is to represent our 16,000 members on a national political level. We do this through advocacy efforts, and we make a difference improving care, support, and treatment for those who struggle to make themselves seen and heard.
Approximately 5 percent of Sweden’s population is estimated to live with a rare health condition. While they may be rare – they do not have to be alone.
Being rare is not unusual – and you don't have to be alone!
Rare health conditions usually have lasting consequences for living conditions and specific problems caused by their rarity. They require special expertise and often coordinated efforts from health and medical services and the rest of society. The definition of a rare health condition is that it occurs in fewer than 5 out of 10,000 people.
Our latest News
Our news articles are currently only available in Swedish.
About Us
Get to know Rare Diseases Sweden, our mission and what we stand for. You may be rare – but you are not alone!
Member
Read more about member benefits, our member associations and training for future patient representatives.
Elevhälsan
Read more about our Arvsfoden funded project that strengthens knowledge of rare diseases in School Health Services.
Donations
Support us through a donation or a memorial donation. Either through our 90 account or via Swish payment.
Calendar
Check out our events and activities such as meetings, training courses, fairs and meetings.
Navigating Healthcare
Access our collection of tips, advice and tools based on the experiences of others who have a rare diagnosis.
Rare Diseases Sweden is a proud member of
