Orphan consortium seeks ways to improve care for patients with bleeding disorders in the CIS
On May 6, the introductory meeting of the working group of the Orphan Consortium on Blood Coagulation Disorders was held.
The meeting, which was held in the format of a video conference, brought together clinical specialists and representatives of the patient community from various CIS countries.
The heads of the working group were:
Zozulya Nadezhda Ivanovna (Doctor of Medical Sciences, Russia)
Narbekov Timur Omorbaevich (Kyrgyz Republic)
Among the participants:
Kazimova Mekhpara (Azerbaijan)
Eralieva Meeri Omurovna (Kyrgyz Republic)
Esoeva Lola Gulbekovna (Tajikistan)
Zhulev Yuri Alexandrovich (Russia)
The issues discussed were:
The main issues for patients with blood clotting disorders were:
- Limited availability of diagnostic tests
- Insufficient access to drug therapy
Participants emphasized the importance of taking into account the specifics of the organization of care in each country to effectively address these issues.
As part of the discussion, it was decided to hold a webinar, at which representatives of each country will present the current situation, identify key problems and propose ways to improve the care system, taking into account the possibility of support from the Orphan Consortium.
The date and format of the webinar will be announced later
