Rare diseases Sweden is a national association representing 69 rare diseases patient organizations with together about 16 000 members (in April 2020). 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 initiated the very first Rare Disease Day on the leap day 29 February 2008, a day that is now celebrated in almost 100 different countries. We are also one of the initiators of the Centers of Rare Diseases present at university hospitals across Sweden. 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 2 000 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 7 000 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.
Collectively, as one united voice, we will have a greater impact on society and we will be able to improve the quality of life for individuals living with a rare disease and their families. 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.
We are convinced that a well-functioning health care system is of prime importance to our members and an effective advocacy is the basis for receiving balanced support from government and society. Our main mission is to push for the further development of centers of expertise with focused and coordinated specialist care for rare diseases.
The 10th European Conference on Rare Diseases & Orphan Products – ECRD, the movie
Feel free to take a look at the movie about the digital conference ECRD, 14-15 May, 2020
Rare Stories, our event at Rare Disease Day 2020 – the movie
Download summary in English, about Rare Stories at Rare Disease Day 2020
See what happened at our event Rare Stories, in Stockholm, Sweden, Rare Disease Day: February 29 2020 – the movie
The same movie with sign language interpretation
Read more about Rare Disease Day