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The Society
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, Bryndis Ragnarsdottir, Sveinn Gislason, Johann Agustsson and Hrafn Thorisson. The physician and nurse-coordinator from the Hemophilia Center also attend most board meetings without formal participation of the board.

Name Position Email   Phone  
Birgir Örn Steingrímsson
Chairman 8989654
Bryndís Ragnarsdóttir
Secretary 6944960
Sveinn Gíslason Treasurer 8566507
Svava Thorsteinsdottir
Member of board 6966576
Hrafn Thorisson
Member of board  
Jóhann Friðrik Ágústsson Member of board 6978087
Páll T. Önundarson Physician, non-voting participant 5435010
Hallgerður Bjarnhéðinsdóttir Nurse coordinator, non-voting participant 8245414

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 80.

Structure and activities

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. Committee meetings are 3-4 every year, one general meeting is every year as well as 1-2 educational meetings. 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 is it´s main venue of information as the society does not publish paper based information.

Cooperation with other hemophilia societies

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 biannual world congress. At the next meeting in Vancouver, Canada, the society will have a representative along with two staff members of the hemophilia treatment centre. Participation in Nordic activities with other Nordic hemophilia societies is rich and important to the Icelandic society. At least one member of the board attends the Nordic meetings held every year.

Educational Material

The society can provide educational material for those interested. Please contact the hemophilia nurse centre coordinator, Gudrun Bragadottir.

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