Rare Diseases Sweden (RIKSFÖRBUNDET SÄLLSYNTA DIAGNOSER) City: Solna, Stockholm Phone : +468280311
Rare diseases Sweden, founded in 1998, is a national alliance for different groups of rare diseases. As a public interest organization, we can offer these groups membership in our organization. The alliance represents about 45 different rare disease associations and has 12 000 individual members. In Sweden, a disease is defined as “rare” when it affects less than 100 in one million. The main idea 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 and their families.
Our agenda includes:
• To establish a common base for the problems shared by all people who have rare diseases.
• To be the united voice of the rare disease support associations.
• To push for the development of centres of expertise, in order to promote a coordinated specialist care for rare diseases.
• To especially highlight rare diseases on every leap day, the rarest day there is.