Experts from Kazakhstan and Azerbaijan spoke at the thematic session “Blood coagulation disorders” of the II CIS Orphan Forum

• Yernas Tleutaevich Tuleutayev — MD, Head of the Republican Center for Coordination of Orphan Diseases
• Dushimova Zaure Dmitrievna — Head of the Center for Coordination of Orphan Diseases in Adults, JSC "Research Institute of Cardiology and Internal Medicine", Kazakhstan

Characteristics of the situation:

• Population: ~20 million, large geographical extent (the distance between Astana and Almaty is 1,500 km).
• Provision of drugs is about 5 IU per capita, mainly for children.
• Difficulties in adult patients associated with the transfer of functions from hematologists to the compulsory medical insurance system and back.
• Diagnostics of inhibitory forms is available only in 3 cities (Astana, Almaty, pediatric center).
• There is no single registry, work is underway to create one based on Domumed, covering 85% of institutions.
• The transition of patients from pediatric to adult services has begun with the formation of individual routes.
• An updated clinical protocol is being developed (previous - 2015), new drugs and methods are taken into account.

• Mehpara Kazimova - hematologist, PhD, assistant of the hematology department of the Azerbaijan State Institute of Advanced Medical Studies named after A. Aliyeva

Population of the country: about 10 million people, with more than 3 million living in Baku, which facilitates the centralization of specialized care.

More than 700 patients have been registered, including:

• 76 with hemophilia B,
• 44 with an inhibitor form,
• cases of female hemophilia, von Willebrand disease and other rare forms.

Provision of factors: 3.5 IU per capita, provided entirely by the state budget. Azerbaijan does not receive humanitarian aid and purchases drugs on its own.

Drug provision:Recombinant factors are used, as well as emicizumab (non-factor therapy) - prescribed to 20 patients.

Centralization:One republican hemophilia center in Baku, founded in 1973 (patients from the regions are forced to regularly travel to the capital (sometimes more than 400-500 km), which remains a barrier to equal access).

Patient registry: Maintained centrally, but does not cover all forms of hemostasis disorders (data is entered based on appeals, state monitoring of treatment effectiveness is not yet sufficient).

• A presidential decree banning consanguineous marriages came into force in 2025;
• Genetic screening before marriage has become mandatory.

In the next post, we will tell you about the situation with coagulopathies in Tajikistan and Belarus, including data on availability, accessibility of diagnostics and rehabilitation, as well as key steps to develop assistance.