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Rare Diseases Q3 2022

War on two fronts: leveraging a rare disease in Ukraine

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Anastasiia Saliuk

Senior Project Manager for Ukraine Response, EURORDIS-Rare Diseases Europe

Ukrainians with rare diseases often rely on luck to live. Even those with debilitating symptoms and limited mobility with the most urgent needs are unable to access essentials.

An estimated two million people are living with a rare disease in Ukraine. Many of the 6,000 rare conditions are often disabling and frequently life-threatening, even in normal times. When faced with a war, it adds an extra layer of complexity and uncertainty.

Limitations of disease

Since February 2022, EURODIS-Rare Diseases Europe has mobilised the wider rare disease community to help Ukrainians living with rare diseases because the community we serve is as vulnerable as it gets. How can someone with a rare skin condition survive in a basement while hiding from missiles without the risk of catching an infection? How can someone needing mandatory daily inhalations survive in a city that is cut off from electricity for months? And is there a way to flee the war if you are wheelchair-bound?

The humanitarian consequences of the war will remain in place for years to come.

Providing necessities

The Rare Barometer survey on Ukraine results shows that nearly 40% of Ukrainian families living with a rare disease were forced to move internally or abroad. At least eight in ten reported at least one interruption of the care they usually receive. Satisfying basic needs — a place to live, food, water, hygiene products and clothing — is also an issue for many.

Various organisations and governments across the globe have mobilised their resources to support Ukrainians living with a rare disease, and a lot has been achieved, but there is more to be done. The humanitarian consequences of the war will remain in place for years to come. While our task is to cover the most urgent needs, we should also consider longer-term priorities, which require more sustainable solutions.

How to help those affected

We encourage international actors to proactively include Ukrainians living with a rare disease in their response programmes and take their complex needs into account — from accessible housing to adjusted employment opportunities to expensive treatments. After all, supporting the most vulnerable is our common mission.

We should not feel helpless. Everyone can do something to help those in need — by welcoming them, providing essentials or advocating for policies that facilitate their displacement. Let’s unite, leaving no Ukrainian with a rare disease behind.

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