Фонд «Круг добра», созданный Указом Президента России в 2021 году, обеспечил доступ к передовой генной терапии для детей Ингушетии, страдающих буллезным эпидермолизом – редким и тяжелым генетическим заболеванием, известным как «болезнь бабочек». В Центре генных дерматозов НИКИ детства Минздрава Московской области началось лечение препаратом Беремаген геперпавек, одним из первых в мире и в России лекарств генной терапии для этого заболевания.
Беремаген геперпавек, препарат генной терапии (привнесение в организм функциональной копии неработающего гена), представляет собой прорыв в лечении дистрофического буллезного эпидермолиза с изменениями в гене COL7A1.
Россия стала одной из первых стран, где этот препарат стал доступен. В ближайшее время лечение с помощью Беремаген геперпавек получат 47 детей с тяжелыми формами из Ингушетии и других регионов страны. Всего в ближайшие месяцы лекарство получат более 150 детей из 65 регионов России.
«Благодаря федеральному финансированию и эффективному взаимодействию с Министерством здравоохранения Республики Ингушетия, 29 детей получили дорогостоящие лекарственные препараты, в том числе не зарегистрированные в России, на общую сумму 679,5 млн. рублей за 2023-2024 гг. Особо хочется отметить получение генно-терапевтического препарата «Виджувек» для лечения троих детей с буллезным эпидермолизом на сумму более 100 млн. рублей. Это яркий пример того, как «Круг добра» помогает детям с редкими и неизлечимыми заболеваниями, даря им шанс на полноценную жизнь», — отметила министр здравоохранения республики Зара Албакова.
Фонд «Круг добра» продолжает свою важную миссию по обеспечению помощи детям с тяжелыми и редкими заболеваниями, предоставляя не только лекарства, но и необходимые средства реабилитации.
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