Double dose of suffering: how the war in Ukraine has affected patients with rare diseases
Press Release: 09.08.2023, Katowice, Poland. Healthcare Education Institute. The Foundation
Among the refugees from Ukraine, there are particularly vulnerable individuals for whom the war means double suffering. These are Ukrainian patients with rare diseases who are fleeing not only from bombings but also due to the lack of appropriate therapy. Their life in exile is exceptionally difficult, and the prospects of returning and receiving treatment in Ukraine are limited.
One of such individuals is Nastya, a seven-year-old girl with a rare set of gastroenterological diseases. Her family came to Poland from Lysychansk, in the Donbas region, which is currently in the temporarily occupied territories. They had to flee the war under very dramatic circumstances due to the worsening health condition of the girl. They left behind all their belongings and lost everything, including their newly built house. They became among the millions of refugees who left Ukraine after 24 February 2022.
It is estimated that currently around 5.87 million Ukrainians are covered by European and national protection mechanisms (UNHCR data, December 2022).1 Taking into account the prevalence of rare diseases in society, it turns out that around 200,000 of the refugees are patients with rare diseases.
Who are patients with rare diseases?
This is a vast group of individuals suffering from complicated, chronic, and often life-threatening diseases. They require specialized treatment, often immediate, that ensures their survival. They are much more vulnerable to the negative consequences of displacement due to the inability to work, lack of means to sustain their livelihoods, or the need for expensive medical treatment and equipment.
“Every one of these patients has a unique story, just like Nastya. They often remain in the shadows. That is why we created the ‘Brave RARE Ukraine’ project,” explains Adrian Goretzki, President of the Healthcare Educational Institute, a Polish NGO responsible for this initiative. The project aims to be a non-profit initiative dedicated to shedding light on the circumstances and needs of Ukrainian refugees with rare diseases. It aims to give a voice to families dealing with rare diseases and to show what Russian aggression has done to their lives.
A voice of refugees with rare diseases
“Brave RARE Ukraine” is a series of video testimonials featuring patients and their families, doctors from Ukraine, and Ukrainian patient advocates. The first videos are already available on the project’s website, braverare.com, with more to be released in the coming weeks.
“Many people with rare diseases have left Ukraine due to safety concerns or disrupted access to care arising from the ongoing war. With support in Poland and elsewhere, these people have continued vital treatment abroad. As they become more integrated into the health and social care systems of their new host countries, the prospect of returning home grows more complicated. Still, most long to go back after the conflict ends and resume treatment in their home country,” says Michael Wilbur, COO of EURORDIS – Rare Diseases Europe, a non-profit alliance of over 1,000 rare disease patient organisations that has been involved in providing assistance to patients from Ukraine since the start of the full-scale war.
This statement is supported by statistics. According to recent UN data, 76% of Ukrainian refugees express a desire for repatriation. For patients with rare diseases, a key criterion when planning their future is access to proper medical care.
Returning to the homeland: uncertainty and hope
The uncertainty and hope of returning home are particularly evident in the case of two-year-old Masha’s family. They come from Mykhailivka, a small village in the Zaporizhzhia region. Russian forces entered the village on the third day of the war. Today, Mykhailivka lies on the frontline, where Ukrainian offensive operations are taking place. At the war’s beginning, Masha was diagnosed with Nijmegen breakage syndrome, a rare congenital disease that manifests itself in immunodeficiency, a high risk of tumours, and microcephaly. The poor conditions in bomb shelters—extreme humidity and low temperatures—aggravated her symptoms, making her seriously ill. The family had no choice but to leave Ukraine and seek treatment in Poland. Still, they hold on to the hope of returning home one day and providing Masha with the continuity of treatment she needs.
“One of the project’s long-term goals is to raise awareness and support the creation of policies that facilitate the post-war repatriation of refugees who wish to return to their homeland. However, they have no guarantee that upon return they will receive treatment at a comparable level to what they have in their host countries. Treatment for rare diseases often involves advanced and innovative therapies, and we are aware that the Ukrainian budget, affected by the consequences of the war, may not be able to afford it. Therefore, we aim to influence national and EU policies to include provisions for these patients’ therapies, thereby facilitating their repatriation,” explains Adrian Goretzki.
The Healthcare Education Institute is a Polish NGO established in 2017 on the initiative of Adrian Goretzki, a person with a rare disease and a patient advocate with over 10 years of experience in working for patient communities. In their daily activities, HEI strengthens the voice of patient communities, educates their leaders, creates reports, and conducts research and studies, all to ensure that people with rare diseases are noticed and receive the best possible medical care.
Since the war broke out, HEI has been doing everything possible to support rare disease patients from Ukraine. The foundation has an international team of dedicated volunteers working together to ensure patients’ safety and access to treatment. You can read more about their everyday work on: eduinstitute.org.
 UNHCR, Ukraine situation Flash Update #51, July 2023, available at: https://data2.unhcr.org/en/documents/details/102155
Video trailer (download available): https://drive.google.com/file/d/1fN8-MpjbzQOaM7dY68bq4HJmDs-AjAd6/view?usp=sharing