Session "Blood Coagulation Disorders" at the II CIS Orphan Forum | Moscow, June 27, 2025
Blood coagulation disorders are one of the most significant categories of orphan diseases. According to the World Federation of Hemophilia, there are about 400,000 patients with hereditary coagulopathies registered in the world, including hemophilia A and B, von Willebrand disease and other rare forms.
Timely diagnosis determines the possibility of early initiation of therapy, prevention of complications and prevention of disability.
Modern technologies — prolonged factors, non-factorial drugs, rebalancing and gene therapies — open up new opportunities for the CIS countries. But their implementation requires the development of routing, sustainable financing and trained human resources.
The session was moderated by:
- Nadezhda Ivanovna Zozulya, MD, Head of the Clinical and Diagnostic Department of Hematology and Hemostasis Disorders, Federal State Budgetary Institution "National Medical Research Center of Hematology" of the Ministry of Health of the Russian Federation;
- Timur Omorbaevich Narbekov, hematologist, expert of the World Hemophilia Federation for Central Asian countries, National Center of Oncology and Hematology of the Ministry of Health of the Kyrgyz Republic.
The moderators noted the progress achieved over the past 15 years, emphasized the role of cooperation between the medical and patient communities, and presented the results of a blitz survey of specialists from four countries: Azerbaijan, Kyrgyzstan, Tajikistan and Uzbekistan.
The main problems identified by respondents were:
- insufficient routing,
- deficit of diagnostic resources,
- prevalence of on-demand treatment.
In the next post, we will tell you how care for patients with bleeding disorders is organized in Kazakhstan and Azerbaijan
