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.

On the day the war broke out, her hospital found itself on the front line. Admissions of patients were suspended. Some doctors moved to work in other hospitals, and due to the threat and constant influx of patients, they not only worked there but also lived there for weeks. Some doctors could not reach work because they were in occupied territory or under fire. Professor Bondarenko spent the first weeks with the children in a bomb shelter, helping patients remotely. Thanks to her efforts, many patients received immediate appropriate treatment abroad.

Marianna, on the third day of the war, broke her leg while leaving the bomb shelter. Despite that, she continued to work - with her leg in a cast and crutches - helping not only her patients but also displaced people. She felt she couldn't leave them and couldn't abandon her medical team. Marianna also talks about the difficult psychological challenges faced by doctors who, on one hand, must be fully focused on their work, but on the other hand, are aware that their families - partners, children - are somewhere outside the hospital, and concern for their safety constantly accompanies them.

All-night bomb alarms and numerous alarms during the day posed a challenge for Prof. Boyarchuk and the entire medical staff, who had to organize their actions in the shelter each time, move all medical equipment, and ensure the supply of electricity needed for life-saving devices. Continuous alarms were also a problem for disabled patients, who found it difficult to move to shelters. Due to the large number of internal displacements, doctors were uncertain whether they would be able to secure medications and equipment for their existing and new patients. Some patients left the country, but for those who remained, continuity of treatment had to be ensured.

War affects not only the physical health of patients but also their mental well-being. Faced with war, doctors had to learn to support patients with rare diseases in a new way. Patients were dealing with numerous concerns: whether they would be guaranteed therapy, whether there would be enough life-sustaining drugs, whether it is safe to stay in Ukraine. Khrystyna emphasizes that doctors have been taught over years of study and internships how to cope in various life situations, but no one can prepare for the outbreak of war and the challenges associated with it. And as medical staff, they must be emotionally strong to effectively assist patients and prevent chaos from arising.

Before February 24, 2022, Ukrainian doctors had similar plans and tasks to their colleagues from other countries: creating a registry of patients with rare diseases, developing state programs to ensure funding for orphan drugs, implementing life-saving therapies. Unfortunately, the war interrupted many ambitious plans and necessitated a focus on the here and now. The development of the Ukrainian healthcare system has slowed down. Nevertheless, Professor Chopyak emphasizes that doctors still regularly gather in various expert committees to collectively develop standards of care for patients.

Brave RARE Ukraine

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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Doctors' stories

Brave Ukrainian doctors who help patients in a war-torn country talk about their everyday life and how they see the future of the Ukrainian healthcare system.

Prof. Anastasiia Bondarenko

Physician from Kyiv, taking care of patients with rare diseases

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Physician from Ivano-Frankivsk, taking care of patients with rare diseases

Dr. Marianna Derkach

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Prof. Oksana Boyarchuk

Physician from Ternopil, taking care of patients with rare diseases

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Physician from Lviv, taking care of patients with rare diseases

Dr. Khrystyna Lishchuk-Yakymovych

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Prof. Valentyna Chopyak

Physician from Lviv, taking care of patients with rare diseases

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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

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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!

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A few photos from the film sets

Our team and Brave RARE patients during the recordings

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