Riksförbundet Rarliga Diagnoser was established in 1998. With a “rare diagnosis” is meant a condition or a disease that leads to extensive functional impairments and is present for no more than 1 person per 10,000 inhabitants. The definition is determined by the National Board of Health.
Rare diseases Sweden is a national alliance for different groups of rare diseases. As a public interest organization we can offer these groups membership in the organization.
The organization represents more than 50 different diagnoses and 12 000 individual members. A disease or disorder is in Sweden defined as rare when it affects less than 100 in one million. Living with a rare disease often involves a set of complex needs for support and treatment. The public healthcare systems often fail both in quality and in handling the individual with a rare disease in a correct way.
The main idea is that collectively we will have a greater impact on society and in the long term improve the situation both for people living with a rare disease as well as their families. Our communication efforts include not only politicians and decision makers but also health care givers, schools and other public agencies.