Icelandic President Guðni Th. Jóhannesson invited children suffering from rare diseases and their families to his residence at Bessastaðir yesterday, according to Vísir. The occasion was to celebrate Rare Disease Day, an international awareness-raising event in which over a thousand patient organizations worldwide participate.
The Icelandic Association of Unique Children (Félag einstakra barna) was founded in 1997 to support children and young people with rare diseases and syndromes. All those are chronic diseases, which have a long-term effect on the patients’ and their families’ lives. More than 250 families are members of the association.
Many of those diseases have not been much researched, and in most cases, no actual treatment is available. All the diseases are serious and some of them affect life expectancy and quality of life. In some instances, very few cases exist worldwide. There are even children who haven’t been diagnosed, because of how rare their condition is.