The Russian Foundation “Circle of Kindness” has started providing Russian children with Leber’s Hereditary Optic Neuropathy (LHON) with the drug Raxone (active ingredient: idebenone). The fund’s press service has announced that the initial group of 33 patients from 14 regions nationwide has commenced their treatment with the medication.
LHON is a rare genetic disorder affecting approximately 1 in 27,000 to 45,000 people. Experts predict that the number of LHON patients in Russia could reach 750 over the next decade. Krug Dobra continues to accept applications from regional healthcare authorities to supply the drug to eligible patients.
Without treatment, the disease inevitably leads to complete vision loss. According to Vitaly Kadyshev, Russia’s leading ophthalmogeneticist, Raxone is expected to be highly effective.
“After a month of treatment, one of my eyes started seeing better,” shared Andrey, a 15-year-old from St. Petersburg, one of the first patients to receive the drug. The treatment course lasts one year on an outpatient basis and may be extended up to 18 months, depending on the patient’s individual response.