31 May 2023,   14:23
Working Group on achondroplasia management protocol to work based on best interest of beneficiaries

Meeting of the Coordination Council on Rare Diseases has been conducted at the premises of the Ministry of Health. The meeting was focused on the development of strategy for treatment of achondroplasia and other rare diseases.

By decision of Council members, the work on development of achondroplasia management protocol has been launched. Physicians, experts, representatives of patients will participate in working process.

The members of the Council discussed various methods of achondroplasia treatment, including newly appeared on the market medicine, vosoritide.

It was noted that the medicine is on early stage of introduction. Thus, scarce information on side effects and effectiveness of its long-term use is available.

According to the official letter of the WHO, requested by the Ministry with regard to the medicine, vosoritide is not included in the WHO list of essential medicines and thus international guidelines are not in place. Such countries as Germany, England, Wales, where assessment procedure of the medicine is terminated indicate to scarce information.

With consideration of international practice, multi-disciplinary group on achondroplasia management protocol will work on the aspects of expediency of introduction of the medicine and selection of prioritized groups for taking the medicine.