At the thematic session “Blood Coagulation Disorders” of the II CIS Orphan Forum, experts from Tajikistan and Belarus presented data on the development of systems for helping patients with coagulopathies.

Republic of Tajikistan

Lola Gulbekovna Esoeva — pediatric hematologist of the National Medical Center of the Republic of Tajikistan "Shifobakhsh", member of the Public Organization "Hemophiles of the Republic of Tajikistan"

• Population: ~10.5 million people, 93% of the territory is mountains.
• 858 patients with hemostasis disorders are registered, including:
• 707 — with hemophilia A
• 38 — with von Willebrand disease
• 12 — with female hemophilia
• 41 —  rare forms of bleeding.
• Diagnostics are available only at the Republican Blood Center (Dushanbe), the photometric method is used.
• Home treatment has begun for children under 16 years of age.
• The launch of a prevention program for severe patients is planned for 2025.
• The Hemophilia Society has been operating since 2017, and since 2018 it has been a member of the World Federation of Hemophilia (WFH) and the European Consortium.

• Until 2018, only cryoprecipitate and plasma were used;
• Since 2023: 30% - plasma concentrates, 10% - recombinant preparations, the rest - cryo and fresh frozen plasma.

Republic of Belarus

Population: ~9.1 million

The hemostasis registry was created in 2009 — a full-fledged information and analytical system.

• - 869 patients with hemophilia
• - 255 — with severe hemophilia A
• - 116 — with hemophilia B
• - 50 — with inhibitor forms

Provision of drugs: 5.57 IU/person (20-fold increase since 2005).

The following are used:

• plasma and recombinant factors (including human and hamster forms)
• emicizumab - in patients with an inhibitory form

Primary prevention began in 2011 for children under 7 years of age (including patients with activity up to 2%).
Since 2018, planned orthopedic surgeries and systemic rehabilitation have been carried out.

Hemostasis rooms have been created in Minsk, Gomel and Grodno, they are opening in other regions.

Special emphasis on social adaptation of patients:

• exclusion of hemophilia from the list of contraindications to spa treatment
• development of a document on the assessment of life activity limitations
• employment of patients,
• work with universities, formation of a document on the status of disability during chronic therapy.
• recognition of disability (documented) during chronic therapy

Pharmacokinetic personalization of therapy has been introduced, a new version of the clinical protocol is being developed.