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.
rare disease patients are among refugees
of Ukrainian refugees express a desire for repatriation
Thanks to your donation, we will be able to record more patient stories, and share the stories of brave Ukrainian doctors who have served patients in many different ways as well as the representatives of patient organizations who continue their activities despite difficult war conditions.
"Fundacja Instytut Edukacji Zdrowotnej" is our registered name in Polish.
You can also support our actions and donate directly to our bank accounts by entering "Donation to help rare disease patients from Ukraine" in the title of the transfer.
Bank account numbers:
Healthcare Education Institute. The Foundation
Gliwicka 74/4, 40-854 Katowice, Poland
SWIFT/BIC: PPABPLPK (BNP Paribas)
We are a non-profit & VAT-exempt foundation based in Poland.
National Court Register no. 0000683283
Tax no. PL6342898875
All funds from individual donations will be used for the implementation of the "Brave RARE Ukraine" project. The settlement of the donations will be published on this website by the end of September 2024.
If you would like to write about the "Brave RARE Ukraine" project or interview us - you can contact us at any time!
Founder & President of the Foundation
Contact in English & Polish
NGO «Rare Diseases Ukraine»
NGO «Rare Immune Diseases»
National Specialized Children's Hospital «Ohmatdyt»