Results of the session "Blood coagulation disorders" II CIS Orphan Forum | Moscow, June 27, 2025
Published 14 July 2025
Last update 29 September 2025
464
The session demonstrated the high activity of the CIS countries in developing systems of care for patients with hemophilia and other coagulopathies.
Despite differences in resources, organization of routes and financing mechanisms, the participants agreed on priority steps:
- development and integration of patient registries
- transition from on-demand treatment to preventive therapy
- introduction of innovative drugs (emicizumab, gene therapy and ultra-prolonged forms)
- increasing the availability of rehabilitation and social support for patients.
The experience of the Republic of Belarus, where a mature system of the register model has been built, was separately noted.
The presented cases confirmed that the development of systemic care is possible even in conditions of limited resources - subject to political will, interdepartmental coordination and sustainable dialogue between the medical, patient and regulatory communities.
