Integration of aid: experience of the Republics of Armenia, Belarus and the Kyrgyz Republic II CIS Orphan Forum | Moscow, June 27, 2025

Published 16 July 2025

Last update 29 September 2025

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In continuation of the session dedicated to the systemic integration of care for patients with rare diseases, experts from Armenia, Belarus and Kyrgyzstan presented national approaches, difficulties and development priorities.

Republic of Armenia

Gasparyan Nadezhda Valerievna,

pediatric neurologist of the Arabkir Medical Center of the Institute of Child and Adolescent Health.

A country with a small population, but due to improved diagnostics, the number of patients with rare diseases is increasing.
There are several genetic centers in the republic, but there are none:
a national center for rare diseases
a chief specialist coordinator
A multidisciplinary approach is necessary, but has not yet been formalized.
A problem of continuity: patients are lost when moving to adult services, where doctors are often unaware of orphan diseases.
There are no approved routes or support system.
Diagnostics, rehabilitation and other elements of care exist, but are not combined into a single model.

Republic of Belarus

Elena Kalinina Anatolyevna,

Deputy Director of the State Institution "Republican Scientific and Practical Center Mother and Child".

The system of assistance is being formed in stages, continuity is ensured from prenatal diagnostics to adult service
Prenatal screening - in interregional centers with high coverage.
The Republican Scientific and Practical Center "Mother and Child" accumulates expert potential in pediatrics, obstetrics, genetics, and has a fetal surgery department (severe cases are sent to the Center)
Since 2025 - expanded neonatal screening for 12 diseases (tandem mass spectrometry method)
Diagnoses are confirmed in the Republican Scientific and Practical Center, where the assistance route is built
Assistance is fixed by law:
responsible institutions and specialists have been identified
specialized centers operate in key areas (cystic fibrosis, endocrinology, oncohematology, neuromuscular diseases)
Specialized nutrition is available for children under 18 and pregnant women with phenylketonuria
The issue of treating adults remains open, but in some cases therapy is continued by decision of the council
Registers are maintained by nosology, the creation of a single national register is being discussed.

Kyrgyz Republic

Tologonov Bakyt Talantovich,

Chief Physician of the National Hospital.

The country is at the initial stage of forming a systemic approach
The National Hospital is the largest multidisciplinary institution - it treats patients with multiple sclerosis and neuromyelitis optica
Until 2022, patients were monitored as part of a scientific project
Since 2023 - provision of drugs at the expense of the state
In 2025, the funding volume reached $ 17 million
Absent:
state medical genetic laboratory (samples are sent to Russia and Kazakhstan);
regulatory framework, routing, list of orphan diseases.
The introduction of the position of chief orphan specialist is under discussion
Despite the restrictions, the National Hospital provides comprehensive management and round-the-clock psychological support.

Common issues and proposals discussed in the session:

The problem of low orphan alertness among primary care physicians was noted.

To improve it, it is necessary to:

include information about rare diseases in training programs;
form clear routes for referring patients with suspected rare diseases;
raise awareness through targeted educational activities.

Need to restore the pediatric education system as an independent direction.

The unsuccessful experience of countries that abandoned the training of pediatricians in favor of general practitioners, which led to a shortage of personnel, was discussed.

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