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.
Our agenda includes among other things:
• To establish a common ground for the problems shared by all rare diseases.
• To be the voice of the rare disease support groups.
• To promote the respect for United Nations rules of human rights and equality.
Centres of expertise
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 development of centers of expertise with focused and coordinated specialist care. Each center will be responsible for several diagnostic groups with similar care needs. In this way the center would be guaranteed a certain volume of patients and all the different diagnostic groups guaranteed access to a center.
The centers of expertise will be responsible for:
• Initiating and coordinating support to the patients local care givers.
• Information to the local care givers concerning needs and treatments.
• Research and development on “their” rare diseases.
Rare Disease Day, 29 February 2016
The first Rare Disease Day was realized on the leap day 29 February 2008 and is now held in 37 different countries. The idea, which was launched by the board of Rare diseases Sweden, was to establish a day to highlight rare diseases and their special needs. The next Rare Disease Day will be on February 29, 2016.
Read more about Rare Disease Day