Russia is increasing its resources for orphan disease care, including in the production of domestic medicines for the treatment of rare diseases, said Sergey Glagolev, Deputy Minister of Health. He said that on Monday, April 3, at a meeting in the Federation Council,
and also stressed that a domestic manufacturer is currently conducting clinical trials of Russia’s first drug for the genetic therapy of spinal muscular atrophy (SMA).
He did not name the company, but the statement is likely to be about Biocad. Its drug known as ANB-4 is the first Russian medicine for the treatment of SMA. Preclinical studies were completed successfully and made it possible to determine an effective and safe dose for the first administration of the drug to patients. In 2022, the Ministry of Health of the Russian Federation granted Biocad authorization for the first and second phases of the trial.
Meanwhile, as the staff of NAFI Analytical Center and Liudi-Mayaki (People-Beacons) charity foundation found out, 65% of Russians do not know about orphan diseases. This was discovered during a survey among 1,100 respondents over the age of 18. Only 7% of respondents are aware of the issue of rare diseases, and the deseases that most of these people knew about were SMA (58% of respondents heard about it), lymphoma (54%) and hemophilia (49%).
