Cystinosis Diagnosed in Russia 

     Although cystinosis is affecting 1 of 200.000 newborns in Europe and the United States, as far as we know until 2007 no patients with cystinosis were known in Russia. Therefore cystinosis was considered to be a “not-Russian” disease. The first Russian case of cystinosis was diagnosed by a paediatrician Mikhail Kagan in Orenburg, a large industrial city on Oeral, on the border between European and Asian parts of Russia. The same year two more patients were diagnosed. M. Kagan, together with a Moscow professor of paediatric nephrology Alexey Tsygin wrote a paper in the Russian Medical Newspaper aimed to reach as many as possible Russian physicians for informing them about cystinosis, which is most likely remains undiagnosed and untreated in the majority of Russian patients. We hope that this Internet page will help to spread information on cystinosis among Russian physicians and draw their attention to this rare, but potentially well-treatable disorder.

The Cystinosis Foundation has been working with Dr. Mikhail Kagan, M.D. of the Orenburg Regional Children's Hopsital in Orenburg, Russia, to help diagnose more children that may have Cystinosis and get information out to other hospitals and doctors throughout Russia

Article is on Page 9 of the Newspaper (In Russian)
 

The National Organization for Rare Disorders (NORD) is coordinating the observance of Rare Disease Day in the United States on February 28, 2009. On that day—and in the weeks leading up to it—we will join with others around the world to conduct a variety of activities to raise awareness of rare diseases and the need for safe, effective treatments.