Special center for people with rare diseases will be established in Bashkiria
UFA, 17 October 2019. /Bashinform News Agency/ translated by Tatiana Aksyutina/.
The Ministry of Health of Bashkiria plans to create a Center for Orphan (Rare) Diseases at the Republican Medical Genetic Center. The corresponding draft order is published on the official website of the department.
The center will help improve the quality of medical care and drug provision for such patients. The director of the Medical and Genetic Center, Ildar Minniakhmetov, has been tasked with developing a regulation on the new center, a schedule of its full-time work, and requirements for the patient registry. In the center, patients will be able to undergo molecular genetic diagnostics and receive advice from specialized specialists.
As of 2018, 434 people were included in the register of patients with rare diseases in Bashkiria, of which 226 were children. Rare or orphan diseases are a group of diseases that affect a small number of people, pathologies occur at birth or in childhood. A total of 7,000 such diseases are described; in Russia, 214 nosologies are included in the list of orphan diseases. State assistance is required to research, develop methods for treating these pathologies.