Twinning Update – August 2004

We are pleased to announce that the Haemophilia Organisation Twinning Programme between Irish Haemophilia Society and the Haemophilia Association of Bosnia-Herzegovina has been recognised and approved by the World Federation of Hemophilia.

The Irish Haemophilia Society twinned with the Haemophilia Organisation in Bosnia in 2004. The Haemophilia Association of Bosnia-Herzegovina (HABH) was founded in 1998 by a number of young men with haemophilia. In that short space of time, they have worked very hard to improve treatment and conditions for people with haemophilia. They want to have factor concentrates available for all.

All the activities of the Association are carried out by the executive from their homes. They do not receive State funding.

There are many similarities between our two associations. The I.H.S. was founded in 1968 and in 1970 there were 90 registered members. They have an active, hardworking and dedicated Board who represent their members’ interests to their Health Ministry and medical professionals. The size of the country and their population size is similar to ours.

Representatives of the Irish Haemophilia Society were accompanied by Eadaoin O’Shea from St. James’ Hospital on an assessment visit to Sarajevo in August 2004 to attend their General Assembly and to take part in their Summer Camp. The Summer Camp was attended by adults and children with haemophilia and parents of children with haemophilia and consisted of presentations and workshops for the adults and art and other activities for the children.

We had the opportunity to meet with the mothers group and it was very moving to hear the mothers describe how they try to let their sons have as normal a life as possible even when they do not have access to proper treatment.

Before embarking on the Twinning Programme with Bosnia it was necessary to decide on priorities and objectives. The I.H.S. and HABH have agreed a three year action plan to work together to achieve the following objectives:

• The establishment of a Haemophilia Treatment Centre in Sarajevo.

• To increase access to factor concentrate. In 2003 the Government purchased 300,000 units of factor concentrate for the entire country.

• To assist HABH to develop their capacity and services including fundraising and awareness

• To assist parents to deal positively with haemophilia and build community spirit.

• To assist children to deal positively with haemophilia.