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Формираните към сдружението работни групи за вродени анемии и нарушения в коагулацията, левкемии, лимфоми и миелопролиферативни заболявания са се заели с изключително важната задача да наложат възможно най-добрия съвременен професионален подход – този на интердисциплинарна грижа за пациента, фокусирайки професионализма на широк кръг специалисти, в тясна колаборация с институциите и пациентските организации.
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NT: Contradictory. I met with people who have the desire, ambition and willingness to work to change the system in a positive direction in order to provide treatment and care for patients with rare diseases. Among them – both patients and doctors have enthusiasm and readiness to sacrifice personal time, effort and work to achieve the final result. But I also met people, who, after more than 20 years after the so-called “transition”, are still waiting for the change to start from the top. I heard a call to institutionalise communication between different medical units and many, many complaints about the lack of clinical pathways and adequate funding. I can not deny the defficit of resources and the unenviable position that medical professionals take today. However, it is an indisputable fact that the expert community namely is the one which is expected to give impetus to change. By legislation and by default experts are those who have to write a clinical pathway, to justify it to the appropriate medical society and the Bulgarian Medic Union, which in turn to defend it when negotiating with the National Health Insurance Fund the annual national healthcare framework contract. I can not accept experts with large a huge CV, who admit with no fear that patients are not treated as by standard, because the “State” do not “provide” the necessary conditions. In times like today, passing beneath the leitmotif of the global crisis and increasing healthcare costs, medical professionals should uphold the right to apply their expertise at the highest level. Otherwise, I do not see a point in their acclaimed scientific and professional titles.
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