A working meeting with representatives of the Public Union "Orphan Diseases of Ukraine" was held at the Center. The focus of discussion was improving patients' access to modern treatment within the framework of implementing the joint Memorandum of Cooperation and continuing the panel discussion "Beyond the Possible" that took place in February.
The meeting participants confirmed the importance of continuing and strengthening systematic dialogue between state authorities, the medical community, patient organizations and international partners for the development of the system of care for people with rare diseases in Ukraine.
Among the priorities of cooperation discussed were:
A path for innovations
Minimizing regulatory barriers for clinical trials. More projects in Ukraine — more chances for patients to receive the latest therapy.
Updates in the HTA procedure
Current timelines for state HTA expert evaluation were discussed, taking into account European assessments, a unified approach to assessing clinical value, patient-centricity of decisions — both during expert evaluation and the formation of recommendations, and based on the results of publishing draft HTA conclusions
Introduction of the latest therapies and updating of treatment protocols
Updating clinical treatment protocols is the way for Ukrainian patients to receive treatment according to the most up-to-date global clinical guidelines, and for the latest therapy methods to become more accessible in real clinical practice.
The joint work of the Center and patient organizations is not merely an exchange of views, but a real path toward building a European system of care for patients with orphan diseases.
We thank our partners for the constructive dialogue!
