Russia to procure Vyjuvek for treatment of patients with butterfly syndrome

“Circle of Goodness,” one of Russia’s largest public funds, specializing on procurements of drugs for children with rare diseases, will begin procurements of the US drug Vyjuvek (beremagen heperpavec), which is designed for patients with epidermolysis bullosa (butterfly syndrome), reports The Pharma Letter’s local correspondent.

Nikolai Potekaev, chief freelance dermatologist of the Russian Ministry of Health, said in an interview with the Russian Vedomosti business paper, in Russia, 494 minor patients with epidermolysis bullosa of various forms are registered. At the same time, according to estimates of the Russian Butterfly Children charity foundation, there are about 1,000 adults and children with this disease in the Russian Federation.

In May 2023, the US Food and Drug Administration (FDA) approved Vyjuvek, from USA-based Krystal Biotech (Nasdaq: KRYS), the first topical gene therapy for epidermolysis bullosa. This drug is not registered in Russia. There have been no applications for its registration in the Russian Federation, a representative of the press service of the Ministry of Health said. According to a representative of the Circle of Good Foundation, the Foundation has the right to purchase drugs that are not registered in Russia