This is a resource centre for people living with a rare disease from Ukraine, both those who are currently in the country and those who have sought refuge in Europe. It is also for the patient organisations looking to help them.
Many people with rare or chronic conditions are unable to travel and so are remaining in Ukraine. We hope to link them to information on how those in Ukraine can get the support they need, and will update this page accordingly.
Organisations that provide support
Contact EURORDIS Members in Ukraine
Rare Diseases Hub Ukraine based at the National Children’s Hospital Okhmatdyt in Kyiv is the virtual coordination center which connects patients with rare diseases from Ukraine with organizations and hospitals that are members of the European Reference Network (ERN) in order to provide the specialized medical support they may need during this emergency.
Additional resources
Ukraine, in an emergency order dated 03/03/2022 № 406, has allowed the import of medicines into the territory of Ukraine without complying with the requirements of Part 1 of Art. 17 of the Law of Ukraine “On Medicinal Products”. This means that certification or procedures that would delay the transportation of medicine, such as licences, requirements to use only certified means of transport or strict storage conditions, have been removed.
In February 2022, the Verkhovna Rada of Ukraine adopted the law “On Compassionate Use Programs” which regulates the implementation of programs for providing patients with compassionate medicines (free of charge). The law provides for the creation of conditions in Ukraine for the access of seriously ill patients to innovative treatment.
Clinical trials. The Ministry of Health of Ukraine and SE “State Expert Center of the Ministry of Health of Ukraine” ensure the continuations of clinical trials of medicines in Ukraine, namely, they continue to carry out continuous examination and approval of CT materials and regulatory supervision of CT . Information about CT in Ukraine, published by SE “DEC of the Ministry of Health of Ukraine”: 2022, 2023
You can help
