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Bulgaria joins initiatives marking World Rare Disease Day

There is no updated national program for rare diseases in Bulgaria

Photo: BTA

In support of people with rare diseases, balloons in different colors flew over Sofia at noon, BTA reported. The balloons were released in the courtyard of the Alexandrovska Hospital, where medical specialists, patients and their relatives gathered earlier today for a forum where they discussed the challenges of diagnosing and treating rare diseases. With the symbolic gesture of empathy, they hope to draw attention to the problems of these patients in Bulgaria. 
At the forum, organized on the occasion of the World Day of Rare Diseases, experts noted that there is no updated national program for rare diseases and a regulation on the activities of expert centers. There is also a lack of support from the Ministry of Health. The promise of the health authorities to include three more such diseases in prenatal screening has not been fulfilled.

Five percent of all rare diseases have treatment, but the remaining 95% do not, according to experts. 

And in Bulgaria, there is no data on the number of Bulgarians with rare diseases. The hope of specialists lies in the European Alliance for Research on Rare Diseases, which enables doctors to be more useful to patients with better prevention, diagnosis and treatment.

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