English -about Einstok börn / Unique Children in Iceland

 

Unique Children in Iceland

 

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 250  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 an 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.

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 witih, unite parents and patients with rare diseases.

 

Einstök börn can be contacted through email, einstokborn@einstokborn.is

Einstök börn

Háaleitisbraut 13, 3. hćđ
108 Reykjavík

Sími 568 2661 / Gsm: 699 2661

einstokborn(hjá)einstokborn.is

Opnunartími á skrifstofu:

Mánudaga 9-13 og
Fimmtudaga 12-15:00

Fylgdu okkur á facebook

Skráđu ţig á póstlistann hjá okkur