The Icelandic Hemophilia Society was established in 1977. Its objective is to guard the interests of hemophiliacs, provide information and consultation to hemophiliacs and their families, and to further the knowledge and understanding of hemophilia and other bleeding disorders.
The board consists of 5 members, elected every second year except the chairman, who is elected every year. The current chairman is Birgir Orn Steingrimsson. Other members of the board are; Svava Thorsteinsdottir, Helgi Thor Thorsteinsson, Sveinn Gislason, Einar Ingi Davidsson and Bergthor Hauksson
MEMBERS OF THE SOCIETY
The majority of members consists of people with bleeding disorders and their relatives. Others include professionals in the speciality and other interested on the subject. Number of members is around 70.
The society extends over the whole country. Due to the small size of the society it does not have an employee and committee members and hemophilia centre staff carry out the work. An important factor of the society is to join together those affected by bleeding disorders and to enhance the exchange of ideas and experience. The society´s hompage and facebook is it´s main venue of information as well as it´s meetings as the society does not publish paper based information.
STRUCTURE AND ACTIVITIES
The Icelandic Hemophilia Society has been a member of the World Federation of Hemophilia since 1978. The society has usually had a representative at the WFH´s world congress.
Participation in Nordic activities with other Nordic hemophilia societies is rich and important to the Icelandic society.
The Icelandic Hemophilia Society is also part of EHC (european hemophilia consortium