YEAR 2007

The Estonian Hemophilia Association was founded in 1992, and 44 members take part in the association's work. The objectives of the activities of the Estonian Hemophilia Society in 2007 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. The summer seminar took place this time in the Värska Sanatorium. 31 adults, 4 children took part. In addition to treatment procedures and aqua aerobics, lectures and presentations were heard about what happened at the European Hemophilia Consortium conference, the work of hemophilia nurses in other countries, and various viruses and their use in gene therapy.

The participants of the summer seminar had a quiz to get to know the surroundings better and visited the Seto Museum. The seminar was made possible thanks to a project financed by the EPI Fund and the support of the companies Bayer and Baxter. The summer seminars are very popular among the members of the association. Participating in summer camp is the biggest event of the year and therefore requires proper preparation. Unfortunately, the number of participants is limited due to limited financial resources. Unlike the summer camps organized in other European countries, the summer camp organized by our association is oriented towards the whole family. The aim is to provide a relaxation opportunity for family members of hemophilia patients and to enable them to share knowledge and experiences with each other.

Traditionally, hemophilia patients' day was celebrated on April 17 with a seminar and a general meeting of the association. The topic of the seminar was hepatitis C treatment, effectiveness and complications. Until now, a few hemophiliacs have been treated for hepatitis C virus in Estonia, but other European countries have longer-term experiences.
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 Parma, Italy. They also participated in the training of hemophilia associations of Central and Eastern European countries organized by the World Federation of Hemophilia in Warsaw, Poland. The training taught how to plan and carry out lobbying. Through group work and round table discussions, a lobbying project was drawn up, the means for its implementation were described. The goal of the lobbying project was to achieve equal treatment opportunities for hemophilia patients in all European Union member states, taking into account the problems and needs of this country. The training was very useful and the knowledge gained can be used in the activities of the association.

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