MEMBER
Rare, but not alone!
Being rare is not uncommon – and at Rare Diseases Sweden, we know that better than most.
Your condition is considered rare if it affects no more than 5 in 10,000 people. At times, being rare can make it difficult to be seen, to make your voice heard and to receive the care or support you are entitled to. But you are also one of 500,000 people living with a rare disease in Sweden. So being rare is not really that uncommon – but you are unique!
We offer our members:
Opportunities to share knowledge and experiences with other patient organisations and people with similar experiences.
Courses covering topics of common interest, organisational matters and more.
Support with your organisation’s membership records. Rare Diseases Sweden provides a central membership system for its member organisations and their contact details.
Financial support for member organisations in certain cases. Contact us to find out more about our Association Support.
Insurance cover for your organisation’s activities through Rare Diseases Sweden’s insurance with Folksam, provided in cooperation with the Swedish Disability Rights Federation (Funktionsrätt Sverige). Contact us to find out more about the Medlemsbarn insurance.
Ask us about support for member organisations
SEK 6,000
Become a member of Rare Diseases Sweden
You can apply for membership if you have a rare disease or rare health condition, if you are a family member or loved one of someone who does, or if you are applying on behalf of an organisation or network for people with rare diseases and their loved ones.
Contact us if you would like to learn more about the criteria for your organisation or network to become a member, or if you would like to become a supporting member or an individual member.
A rare photo exhibition
Hello, I’m Rare! Meet 15 people living with rare diseases and their loved ones, who share through photographs and personal stories their experiences of feeling different – and of how well, or poorly, the healthcare system responds to the challenges of living with a rare condition.
The exhibition travels around Sweden, visiting hospitals and other healthcare settings. It features photographs by Jonas Forsberg, a photographer from Örnsköldsvik who himself lives with a rare intestinal disease.
Do you want to become a patient advocate?
Welcome to our online training course for anyone who wants to gain the knowledge and tools needed to represent people living with rare diseases. Find out more about the course here!