About EINSTÖK BÖRN – Support Group for Children with Rare Disorders
Einstök börn (Unique children) is a support group in Iceland for children with rare diseases. The group was established in March 1997 by parents of 13 children who had no other support group to go to. Today there are more than 250 families in the group.
The Icelandic population is small so most of the children suffering from rare diseases are isolated, mostly one or two children suffering from each disease.
Since most of the children in Einstök börn spend long periods in hospitals, one of the group’s main concerns is to establish a good an prosperous relationship between parents and professionals in the hospitals and to make them aware of our unique needs within the healthcare system.
Our future goals are to keep strengthening the group from within and making rare disorders more known in our society than it is today. To make sure that people have access to understandable information about their diseases. We also want to make sure that in Iceland there will be a place that selects information on rare diseases and gives us a chance to participate in collecting and sharing information within Europe.