Einstök börn (Unique children) is a support group in Iceland for children with rare diseases.  The group was established in March 1997 by the parents of 13 children who had no other support group to go to.  Today there are more than 900  families in the group.

The Icelandic population is small so most of the children suffering from rare diseases are isolated, with mostly one or two children suffering from each disease.

Since most of the children in Einstök börn spend long periods of time in hospitals, one of the group's main concerns is to establish a good prosperous relationship between parents and healthcare professionals 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 collects information on rare diseases and gives us a chance to participate in gathering and sharing information within Europe and the world.

https://www.einstokborn.is/is/english