Ukraine Introduces New Tool for More Accurate Identification of Rare Diseases
The electronic healthcare system (EHS) has introduced a directory of rare (orphan) diseases using international OrphaCode codes. It includes over 7,000 rare nosological units, each assigned a unique standardized code according to the international Orphanet nomenclature.
As explained by the Ministry of Health, a correspondence table between OrphaCode codes and ICD-10 codes has been approved. This will allow rare diseases to be matched with the current diagnosis classification system used in Ukraine.
Currently, the accounting of conditions and diagnoses in the EHS is carried out using ICD-10-AM codes. However, this classification does not always provide sufficient detail for rare (orphan) diseases.
The introduction of coding using OrphaCode will enable doctors to more accurately record diagnoses of patients with rare diseases and improve the accounting of such cases in the healthcare system.
In the future, the use of OrphaCode codes will ensure more accurate and reliable accounting of patients with orphan diseases, generate higher quality data for planning medical care and treatment provision, and use standardized international terminology aligned with the Orphanet database. This will facilitate international data exchange and the development of scientific research.
The introduction of the rare (orphan) diseases directory in the EHS is one of the steps in developing the digital healthcare system and bringing Ukrainian approaches closer to European standards for accounting and managing patients with orphan diseases.
As previously reported by "Sudovo-Yurydychna Hazeta" (Judicial-Legal Newspaper), the "National Organization for the Verification of Medicinal Products" (NOVLZ) was officially registered in Ukraine. The state registration of the organization took place on July 10, 2026, according to the Ministry of Health.
The main goal of the organization is to prevent and combat the circulation of counterfeit medicines in Ukraine in cooperation with European colleagues and the European Medicines Verification Organization. NOVLZ will play a key role in the functioning of the national system that will allow verification of the authenticity of medicinal product packaging and increase transparency in the medicine market.
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