Russian Advocates Seek Help For 'Butterfly Children' (Radio Free Europe/Radio Liberty)
631 views · Published 11 April 2011 · 3:56 · Indexed 8 November 2026
Channel: Radio Free Europe/Radio Liberty · 2011 · News & Politics
Children suffering from the rare genetic disease epidermolysis bullosa, or EB, are sometimes called "butterfly kids" because their skin is as fragile as an insect's wings. Treatments are available, but parents of young patients in Russia say a lack of specialized care and knowledge is hindering their efforts to better their children's lives. The founders of a Russian NGO are seeking guidance abroad to improve treatment and funding at home. Produced by Anton Chiriaev, Galina Chiriaeva and Alexander Kulygin , RFE/RL's Russian Service
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