About Rare diseases Sweden
In Sweden there are several organized rare disease support groups which are too small to make their voice heard. 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. Rare diseases Sweden´s charter is to professionally promote and advance the social and political agenda for our members.
Rare diseases Sweden is an alliance of patient groups and people living with rare diseases. The organization represents more than 50 different diagnoses. 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.
At present, Rare diseases Sweden has about 11 000 individual members belonging to about 50 different member and support groups. 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. Therefore we push for the establishment of centres of expertise for all the rare disease support groups represented in Rare diseases Sweden.
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 highlight the specific difficulties which living with a rare disease imply.
- To promote the respect for United Nations rules of human rights and equality.
Definition of a rare disease
A disease or disorder is in Sweden defined as rare when it affects less than 100 in 1,000,000. 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. Rare diseases Sweden works for the implementation of better living conditions for people living with a rare disease through, among other things, improved healthcare and social services.
Centres of expertise
Our main mission is to push for the development of centres of expertise with focused and coordinated specialist care. The rarity of each disease per se implies a low awareness of the disease within all health care systems. Therefore the persons living with rare diseases risk being misdiagnosed and/or being prescribed the wrong treatment.
Health care for people living with rare diseases must be organized through the establishment of centres of expertise. Each centre will be responsible for several diagnostic groups with similar care needs. In this way the centre would be guaranteed a certain amount of patients and all the different diagnostic groups guaranteed access to a centre.
The centres must have a comprehensive picture of the different diseases with the professional knowledge of healthcare available, concerning occasional treatments and regular treatments as well as rehabilitation.
The centres of expertise will be responsible for:
- Offering treatment.
- Initiating and coordinating support to the patient´s 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 2012
The first Rare Disease Day was realized on the leap day 29 February 2008. The idea, which was launched by the board of Rare diseases Sweden, was to establish a day with the highlight on rare diseases and their special needs. The Rare Disease Day is now held in 37 different countries. The next Rare Disease Day will be on the following leap day 29 February 2012.
Read more about Rare Disease Day