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.
Presentation on accessibility in the 2026 elections
Watch the presentation held after Rare Diseases Sweden’s Annual General Meeting in April 2026 (in Swedish):
How everyone can vote in the 2026 elections, with Maria Montefusco, Election Officer at the Swedish Election Authority.
The Swedish Election Authority explains the voting options available to people living with one or more disabilities, whether physical or cognitive. The aim is to ensure that everyone who is eligible to vote knows where, when and how to vote, as well as the different ways in which they can cast their vote.
To turn on subtitles for the lecture, select “Subtitles” under “Settings” by clicking the cogwheel icon in the top right-hand corner of the video.
We contribute knowledge: Rare Diseases Sweden membership survey 2024
From knowledge gaps and a lack of specialists to poor coordination. Unfortunately, our 2024 member survey once again revealed a reality far removed from our shared vision: that everyone living with a rare health condition in Sweden should have access to the best possible care, support and treatment.
We know that by working together, we can make a real difference. The time to act is now. Our member survey shows where action is needed.
Download the 2024 member survey
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?
International partners
Rare diseases know no borders. International collaboration is therefore essential for sharing knowledge and experience, strengthening the patient voice, and working together on issues that can improve healthcare, treatment and quality of life for people living with rare health conditions.
Here are some of the key international organisations and projects in the rare disease field that we collaborate with:
SBONN – Nordic Network of Rare Disease Patient Organisations
SBONN brings together Nordic umbrella organisations in the rare disease field to exchange knowledge and experience. The collaboration covers areas including national strategies and access to diagnostics and treatment. Among other initiatives, the network has developed a joint position statement on national action plans and is a partner in the Nordic Rare Disease Summit. Click here to visit SBONN’s website.
JARDIN – Joint Action for Integration of European Reference Networks into EU Member States’ Healthcare Systems
JARDIN is a European collaboration aimed at integrating the European Reference Networks (ERNs) for rare diseases into national healthcare systems. The goal is to make it easier for patients to access specialist expertise from across Europe. The project runs from 2024 to 2026 and is developing, among other things, common treatment guidelines and recommendations on how healthcare systems can better meet patients’ needs. Click here to visit the JARDIN website.
EURORDIS
EURORDIS is a European non-profit organisation that brings together rare disease patient organisations from 77 countries. Through a united voice, the organisation works to influence European policy and improve areas including diagnosis, research, healthcare and social care, as well as access to treatment.
EURORDIS also advocates for national action plans for rare diseases and is working towards a common action plan at EU level. Click here to visit the EURORDIS website.
RDI – Rare Diseases International, the Global Alliance of Persons Living with a Rare Disease
Rare Diseases International (RDI) is a global umbrella organisation for rare diseases. It brings together patients, families and patient organisations, connecting key stakeholders to strengthen the voice of the rare disease community worldwide. RDI advocates for the needs of people living with rare diseases at the global level. Two important milestones are:
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United Nations: UN Resolution on Persons Living with a Rare Disease, which highlights the challenges faced by people living with rare diseases and calls on Member States to address their needs through concrete action.
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World Health Organization: WHO resolution recognising rare diseases as a global health priority, establishing rare diseases as a priority area for action to advance equity and inclusion.
Click here to visit the Rare Diseases International website.
DOWNLOAD FOLDER (SWE)
Young & Rare
Youth Group
Are you aged 15–25 and living with a rare health condition?
Then you are welcome to join our Youth Group, where you can meet others who know and understand what it can be like.
We meet regularly online throughout the year. We share tips and experiences and build connections with other young people living with rare health conditions across Sweden. The group takes part in a variety of activities. Among other things, we have written texts that were published in the book Ung och Sällsynt (Young and Rare). Some members have also represented young people with rare diseases at conferences and other events. But for many, the best thing about the group is simply having the opportunity to talk to and get to know others of a similar age who have had similar experiences.
Would you like to know more or get in touch with us?
The book for the young and rare
This book brings together texts, images, quotes and facts from teenagers and young adults living with rare health conditions. It is available both in print and digitally.
We hope the book will be made available in places such as waiting rooms, youth libraries and other settings where it can make a difference – raising awareness of rare health conditions while helping young people feel less alone in their experiences. You can download the digital version in Swedish free of charge.
Would you like a printed copy for your workplace or school? Contact evelina.rosen@sallsyntadiagnoser.se
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.
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.”
