Einstök börn Stuðningsfélag

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 500 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.

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.

For our future goals we want to make sure that Iceland will have a program that collects information on rare diseases and gives us a chance to participate in gathering and sharing information within Europe and all over the world. We want to make sure that people have access to understandable information about their diseases and to educate the society. And to strenghten the group from with, unite parents and patients with rare diseases.