At an extraordinary meeting on October 11, the Cabinet of Ministers of Ukraine has endorsed an Action Plan for the implementation the Concept for the development of the system of medical care for patients suffering from rare (orphan) diseases for 2021-2026.
Adoption of the draft order will allow solving the main problems in the system of medical care for patients suffering from rare diseases by implementing a plan of measures aimed at fulfilling the following tasks:
• development of a transparent and impartial approach to the decision-making procedure for state support of patients with orphan diseases;
• conducting an epidemiological study to obtain data on rare diseases in Ukraine, which provides for the creation and maintenance of a state register of patients with rare diseases;
• ensuring equal and timely access of patients to methods of early detection of rare diseases;
• ensuring fair access of patients to medicines, medical devices and special medical nutrition products and other measures.
"Hundreds of Ukrainians suffering from rare diseases need attention from the state, because usually, the treatment of orphan diseases requires prompt, expensive and long-term treatment. There is an urgent need to approve a clear plan with the relevant executors, which will allow us to reach a new level of providing Ukrainians with quality medical services, as well as increase access to vital medical services and medicines," said Prime Minister Denys Shmyhal.