Brave RARE Ukraine

As a result of the Russian aggression in Ukraine in 2022, thousands of families were forced to leave their country and seek shelter in various places around the world. Being a refugee is obviously a difficult experience. But try to imagine how extremely difficult it is being a refugee and a patient with a rare disease at the same time. Or being the mother of a child with a rare disease who has to flee the country from war.

For more than a year, since helping patients with rare diseases from Ukraine became the main focus of our Foundation's activity, we have heard countless heartbreaking stories. We feel that each of these patients and each of these families are true warriors. Heroes no one has heard of. And we would like to change that.

Patients with rare diseases often remain in the shadows. Their stories rarely break through to the public. And it is no different during war. That is why we came up with "Brave RARE Ukraine", a project in which we want to tell the stories of those who, amidst the cruelty of war, have to struggle with their diseases and the challenges they pose.

Additionally, we would like to shed light on the stories of those who aspire to return to their homeland after the war but face uncertainty and lack of access to essential medical treatment, amplifying their plight and resilience.

A disease is rare when it affects less than 1 in 2,000 citizens in a given country. But so far over 6,000 different rare diseases have been identified, which in total affect 3.5% - 6% of the worldwide population. That is why rare is not that rare – for example in Ukraine there are approximately 1.5-2.5 million people with rare diseases. Some of them suffer from more common and known rare diseases such as hemophilia or primary immunodeficiencies, others – from diseases that affect only few individuals in all of Ukraine.

"Brave RARE Ukraine" is just a part of the activity of the Healthcare Education Institute, a non-profit foundation based in Poland. On a daily basis, we provide patients with support at every stage of their journey to Poland or transit to other European countries, including organizing accommodation and securing access to treatment. We run dedicated websites with information for patients and provide support in legal matters related to staying in the EU. So far, we have managed to help over 90 families of patients with rare diseases from Ukraine. We also organize the humanitarian transports of medicines and medical equipment to hospitals treating patients with rare diseases in Ukraine. The total value of medicines and medical equipment that we have shipped to Ukraine or bought on site so far is around $75,000.

We decided to show the international rare disease community what Russian aggression has done to families with rare diseases.

Who are rare disease patients?

How do we support rare disease patients from Ukraine?

million Ukrainians have left the country because of the war

A bit of statistics

Patient stories

Our Brave RARE patients and their families deserve to have their voices heard on a global scale.

Masha, 2 years old, from the Zaporizhzhia region

Nijmegen Breakage Syndrome

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Her family came from Lysychansk, which is currently in the temporarily occupied territories. They had to flee the war in dramatic circumstances. They left everything behind and lost everything. They are currently building a new life in Poland, focusing on providing Nastya with proper treatment.

A rare set of gastroenterological diseases

Nastya, 7 years old, from Lysychansk

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Yehor, 10 years old, from Zviahel

X-linked agammaglobulinemia

In the case of Yehor's disease, interruptions in treatment can be extremely dangerous. Therefore, as soon as his family arrived in Poland, fleeing the war, it was crucial to provide him with access to life-saving treatment as soon as possible.

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In 2021, he fell ill with Hodgkin's lymphoma, then he was diagnosed with Kabuki syndrome. He came to Poland in very serious condition, when his platelet count was approaching zero. At the University Hospital in Gdańsk, he immediately received proper treatment that allowed him to function normally.

Kabuki Syndrome

Oleksandr, 18 years old, from Vinnitsa

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Vitaly, adult patient from Kyiv

LRBA deficiency

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But that’s not all!

Be prepared for more heartfelt videos featuring the stories of patients and doctors from Ukraine as our project progresses, for we aim to bring these narratives to light and raise awareness.

Going back to the homeland

Support our project

You can help us raise international awareness of the bravery of Ukrainian patients with rare diseases and their families, but also about their hopes and needs!

Contact for media

Stay connected

A few photos from the film sets

Our team and Brave RARE patients during the recordings

Project supporters

Media patronage

We want to thank our partners, supporters and everyone else who made this project possible.

Partners