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September 2022

Helping Ukraine to Build Back Better for Rare Diseases

With this fourth report in the series of EURORDIS’ reports on the challenges faced by displaced Ukrainians affected by a rare disease, we are putting a spotlight on Ukraine.

Since Russia invaded Ukraine on 24 February 2022, the normal flow of life in the country was interrupted in many ways. In the epicentre of the humanitarian crisis, although often forgotten or left behind, vulnerable populations, including people with a rare disease, require special attention and support to address their complex needs.

In this report, we outline the issues still facing Ukrainians living with a rare disease (ULWRD), and explain why these issues remain today and will endure for the medium to long term. We will also set out why we believe the issues for ULWRD go beyond disaster relief. The war has imperilled the progress the country has been making and many organisations have an important role to play to help.

In Ukraine, when faced with destruction, people often say: ‘we will build back better.’ And so, we all have a role to play to help Ukraine to build back better for rare diseases.

It is important to recognise that this is a rapidly-changing situation. This report was compiled in June-July 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.

Learn more about the EURORDIS Ukraine Response here.