Rare diseases Sweden (RIKSFÖRBUNDET SÄLLSYNTA DIAGNOSER) City: Sundbyberg, Stockholm Phone : +46727221834
In Sweden, a disease is defined as “rare” when it affects less than 500 in one million (or 5 of 10 000). 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 more than 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. We push for the development of a national strategy for rare diseases
The main idea of our organisation is that collectively we will have a greater impact on society, thus in the long term improve the situation, both for people living with a rare disease, their families and next-of-kin.