YEAR 2005

The objectives of the activities of the Estonian Hemophilia Association in 2005 were to improve the availability of rehabilitation services for patients and to share information with patients and fellow citizens. We continued the rehabilitation service availability project that started in 2004, during which hemophiliacs and the special characteristics caused by the disease and the needs of the patients are introduced in various rehabilitation institutions in Estonia. The goal of the project is to train the staff of rehabilitation institutions and introduce patients to the possibilities of rehabilitation. We organized a 4-day summer seminar at the Laine Health Center in Haapsalu, where, in addition to the individual rehabilitation program, we listened to lectures about the life and problems of hemophilia patients in other countries, the vaccine against the HIV virus and the latest drugs for hemophilia patients. In cooperation with the Estonian Oncology and Hematology Nurses Association, training on the administration of hemophilia medication at home was held at the summer seminar.

In order to convey information to patients and fellow citizens, a brochure introducing hemophilia and the Estonian Hemophilia Society was designed and printed in color. Printing costs were paid by the company EMT. Printed leaflets were distributed to members of the hemophilia society, hematology departments and at the European Hemophilia Consortium symposium in Budapest. An article introducing the leaflet was published in the newspaper of the World Federation of Hemophilia. Members of the hemophilia society distribute the leaflet to social workers and family doctors and medical professionals in their locality. In addition to the preparation of the information brochure, the interactive material of the World Federation of Hemophilia "Hemophilia in pictures" was translated into Estonian and is available on the association's website.

The association actively communicates with hemophilia associations in other European countries and around the world. Representatives of the Estonian Hemophilia Association participated in the European Hemophilia Consortium conference in Montpellier, France, and the hemophilia forum of Eastern European countries in Budapest, Hungary, to discuss the situation of hemophilia patients worldwide and the role of associations in improving it.

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