The Ministry of Health intends to adopt a concept to develop a system of health care for patients with rare diseases, according to Deputy Minister of Health Svitlana Shatalova.
"In the near future, it is planned to adopt a concept for the development of the system of assistance to citizens suffering from orphan diseases for 2020-2025. We are working on this issue together with the National Health Insurance Fund, the Ministry of Health’s State Expert Center and specialists from patient organizations," Shatalova said at a briefing, Ukrinform reports.
According to her, experts are developing a mechanism to create full-fledged registers of such patients, which will be integrated into the eHealth system. Apart from determining the exact number of such patients, this will allow determining the need for medicines and the amount of funds needed for their purchase when approving budgets.
Shatalova added that the experience of European countries is being studied, and according to the concept, it is planned to create a network of reference centers that will be responsible for establishing an accurate diagnosis in various areas.