'Butterfly children' to be treated with innovative drug in Dagestan
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Dagestan has become one of the first regions to receive a shipment of the groundbreaking local gene therapy medication, Beremagen heperpavek, designed to treat children afflicted with a severe form of epidermolysis bullosa, commonly known as the "butterfly disease". The drug arrived in the republic at the end of December 2024. The initial recipients include three young individuals from Dagestan who have been diagnosed with this condition.
The medication, Beremagen heperpavek, stimulates the synthesis of collagen type VII in the skin, which is either reduced or absent in individuals with this diagnosis. It's worth noting that this drug is not currently approved for use in the country, and the responsibility for providing it to patients lies with the Krug Dobra Foundation.