Orphan diseases and pediatric anesthesiology: the experience of Russia and Uzbekistan
On October 3–4, 2025, the III International Congress "Topical Issues in Practical Pediatrics" was held in Tashkent. It was organized by the Ministry of Health of the Republic of Uzbekistan and the National Children's Medical Center (NCMC).
The program paid special attention to orphan diseases: two specialized sessions were held with the participation of member organizations of the CIS Orphan Consortium.
The moderator was Antonina Alikovna Pak, Head of the Orphan Center of the NCMC of the Republic of Uzbekistan.
Alexander Grigorievich Rumyantsev, President of the CIS Orphan Consortium and Academician of the Russian Academy of Sciences, addressed the participants with a welcoming speech.
N.I. Pirogov Russian National Research Medical University, a member of the CIS Orphan Consortium, presented a series of scientific papers:
Dmitry Vladimirovich Prometnoy, MD, anesthesiologist-resuscitator, head of the department, and director of the Anesthesiology and Resuscitation Center at the Russian Children's Clinical Hospital, spoke about modern technologies for intraoperative monitoring of anesthesia and analgesia in children. He paid special attention to the CONOX system, implemented at the Russian Children's Clinical Hospital, which improves anesthesia safety through precise control of the depth of anesthesia and pain sensitivity, optimizes anesthetic doses, and reduces the risk of hemodynamic complications.
Anton Sergeevich Gorokhov, MD, PhD, Head of the Anesthesiology and Resuscitation Department, Yu.E. Veltischev presented a report titled "Features of Anesthetic Care in Orphan Patients," prepared jointly with Professor Dmitry Anatolyevich Morozov.
He cited statistics: in 2024, 4,048 children with orphan diseases received medical care at the Veltischev Institute, and a third of them required anesthetic support.
The most numerous groups included diseases of the nervous system (1,295 cases), congenital anomalies and chromosomal abnormalities (1,394), circulatory system diseases (1,006), and endocrine disorders (94).
The speaker noted that one of the key problems remains under-examination and under-estimation of the severity of the condition, which increases the risk of complications during surgery, complicating preoperative preparation, and increasing the risk of complications. The most common of these are upper airway obstruction and cardiac risks, which often first become apparent during surgery.
It was also emphasized that specialized anesthesiology clinical guidelines for the care of orphan patients are extremely limited worldwide. The Orphan Anesthesia website, which contains anesthesiology guidelines for rare conditions, was noted as a useful resource.
The participation of CIS Orphan Consortium member organizations in the congress became an important platform for exchanging experiences between specialists from Russia and Uzbekistan and discussing modern approaches to ensuring safe anesthesia in children with rare diseases.
The program paid special attention to orphan diseases: two specialized sessions were held with the participation of member organizations of the CIS Orphan Consortium.
The moderator was Antonina Alikovna Pak, Head of the Orphan Center of the NCMC of the Republic of Uzbekistan.
Alexander Grigorievich Rumyantsev, President of the CIS Orphan Consortium and Academician of the Russian Academy of Sciences, addressed the participants with a welcoming speech.
N.I. Pirogov Russian National Research Medical University, a member of the CIS Orphan Consortium, presented a series of scientific papers:
Dmitry Vladimirovich Prometnoy, MD, anesthesiologist-resuscitator, head of the department, and director of the Anesthesiology and Resuscitation Center at the Russian Children's Clinical Hospital, spoke about modern technologies for intraoperative monitoring of anesthesia and analgesia in children. He paid special attention to the CONOX system, implemented at the Russian Children's Clinical Hospital, which improves anesthesia safety through precise control of the depth of anesthesia and pain sensitivity, optimizes anesthetic doses, and reduces the risk of hemodynamic complications.
Anton Sergeevich Gorokhov, MD, PhD, Head of the Anesthesiology and Resuscitation Department, Yu.E. Veltischev presented a report titled "Features of Anesthetic Care in Orphan Patients," prepared jointly with Professor Dmitry Anatolyevich Morozov.
He cited statistics: in 2024, 4,048 children with orphan diseases received medical care at the Veltischev Institute, and a third of them required anesthetic support.
The most numerous groups included diseases of the nervous system (1,295 cases), congenital anomalies and chromosomal abnormalities (1,394), circulatory system diseases (1,006), and endocrine disorders (94).
The speaker noted that one of the key problems remains under-examination and under-estimation of the severity of the condition, which increases the risk of complications during surgery, complicating preoperative preparation, and increasing the risk of complications. The most common of these are upper airway obstruction and cardiac risks, which often first become apparent during surgery.
It was also emphasized that specialized anesthesiology clinical guidelines for the care of orphan patients are extremely limited worldwide. The Orphan Anesthesia website, which contains anesthesiology guidelines for rare conditions, was noted as a useful resource.
The participation of CIS Orphan Consortium member organizations in the congress became an important platform for exchanging experiences between specialists from Russia and Uzbekistan and discussing modern approaches to ensuring safe anesthesia in children with rare diseases.
