UCSD is recruiting cystinosis patients for first clinical trial of Raptor’s Cysteamine Bitartrate Delayed-release Capsules   Click Here for more Info

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)
First article published in Medical Journal in Russia (In Russian)
Nephrologiya i Dialysis Article (In Russian)
 

 Raptor Pharmaceuticals Presents
at International Cystinosis Congress
An Interview with Ted Daley by Valerie Hotz
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Raptor Pharmaceuticals is investigating DR Cysteamine a delayed-release (DR) oral formulation of cysteamine bitartrate for the potential treatment of cystinosis.  Raptor’s DR Cysteamine may require less frequent dosing and reduce gastrointestinal side effects. 

To Learn more about DR Cysteamine and Raptor
Click Here

Also Click here for the Clinical Trial document

Dr. Ramon Vilalta Visits San Francisco
Dr. Vilalta specializes in pediatric nephrology at the Hospital Vall d’Hebron in Barcelona, Spain.  Last Fall he and his wife visited San Francisco to attend a nephrology conference before heading to Australia.  Click Here to Read More