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January 2023

Report on rare diseases: a clinical perspective


Almost a year after the Russian invasion of Ukraine, issues faced by the population in Ukrainian cities – affected by the hostilities and their humanitarian consequences – continue to multiply.

EURORDIS has previously published a series of reports highlighting the problems of Ukrainians living with a rare disease, in Ukraine and abroad, from the patient’s perspective.

This time, we have asked  Ukrainian doctors to take a closer look at the clinical side of the story and highlight the fantastic work that continues even in times of war.

It is important to recognise that this is a rapidly-changing situation. This report was compiled between November and December 2022, and what is true today may be different in a few weeks’ time. EURORDIS will endeavour to review the situation and provide updates as needed.