YEAR 2006

The objectives of the activities of the Estonian Hemophilia Association in 2006 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 features 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. Pühajärve Rest Center. 32 adults, 4 children younger than 5 years and 5 children aged 6-12 years took part. In addition to treatment procedures and aqua aerobics, lectures and presentations were heard on the latest treatment strategies presented at the World Hemophilia Congress, the current state of biotechnology in 2006, and the teaching of hemophilia nurses in Denmark. For the participants of the summer seminar, there was a bowling competition and a quiz to get to know the surroundings better. The seminar was made possible thanks to a project financed by the EPI Fund and the support of the companies Bayer and Baxter.

The problems of hemophilia patients were presented to the representatives of the European Parliament in Brussels at a forum organized by the European Hemophilia Consortium, which was also attended by representatives of the Estonian Hemophilia Association. At the forum, the members of the parliament were characterized the problems caused by hemophilia and its peculiarity, which need to be solved in order to improve the patient's quality of life. The European Hemophilia Consortium printed a newsletter to present the situation of hemophilia patients in the member states of the European Union. Information sheets describing the situation of Estonian hemophilia patients in Estonian and English were prepared in cooperation with the Estonian Hemophilia Society.

The association actively communicates with hemophilia associations in other European countries and around the world. Representatives of the Estonian Hemophilia Society participated in the European Hemophilia Consortium conference in Sofia, Bulgaria and the World Hemophilia Congress in Vancouver, Canada.

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