Since the day the war broke out, we have been supporting patients with rare diseases who are fleeing the horrors of war. We help them both in Ukraine and after reaching Poland.

Help us supporting rare disease patients from Ukraine

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The war that began in Ukraine is an unprecedented event in recent history. A war in which there are no rules, in which civilian objects, homes, kindergartens and hospitals are bombed and shelled. A war in which the victims are innocent Ukrainians civilians – mothers, children, the sick ones.

A war that has already forced nearly 5 million people to flee the country. Among them are also patients with rare diseases. And even more patients with rare diseases still remain in Ukraine – uncertain whether they will be able to escape and whether anyone will support them in their evacuation and secure their treatment.

Who are rare disease patients?

A disease is rare when it affects less than 1 in 2,000 citizens in 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 are not that rare – 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 haemophilia or primary immunodeficiencies, others – from diseases that affect only few persons in all of Ukraine.

How we support rare disease patients from Ukraine?

Helping patients fleeing the war

in Ukraine

We provide patients with support at every stage of their journey to Poland or transit to other European countries, including faster transport across the border, accommodation and access to treatment.

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On-site support for the Ukrainian patients and medical community

We organize the transport of medicines and medical equipment to hospitals treating patients with rare diseases in Ukraine and we also finance the purchase of medicines on the spot.

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Information and legal support for patients

We prepare dedicated websites with information for RD patients, legal opinions, printed materials, translations of medical records and provide support in legal matters related to staying in the EU.

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Raising awareness about the situation of RD patients from Ukraine

We speak at industry conferences and stakeholder meetings, give interviews, take part in podcasts to draw attention to the needs of RD patients in Ukraine and encourage others to act.

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Helping patients fleeing

the war in Ukraine

  • We provide patients with support at every stage of their journey to Poland or other European countries
  • We organize humanitarian corridors to ensure faster border crossings for patients in serious condition
  • We take care of the short-term accommodation of the patient's family
  • We provide access to treatment in Poland (we cover all procedures, arrange the first visit to a specialist in a given field or hospitalization)
  • In the case of transit to other European countries, we provide contact to a patient organization in a given country, as well as to a medical clinic treating a given disease

This is Yegor, 11 yo XLA patient receiving immunoglobulins in Polish hospital

So far, we have managed to help over 70 families of patients with rare diseases from Ukraine.

On-site support for the Ukrainian patients and medical community

  • We are in constant contact with hospitals treating patients with rare diseases in Ukraine and we collect from them the needs for medicines and medical equipment
  • In response to needs, we organize transports of medicines and medical equipment to specific hospitals
  • Many of these shipments contain specialized products or equipment needed to treat specific rare diseases, e.g. primary immunodeficiencies, spina bifida or cystic fibrosis
  • If the situation requires it, we finance the purchase of medicines on the spot

So far we have organized 20 transports with medicines, medical equipments and other necessary things

The total value of medicines and medical equipment that we shipped to Ukraine or bought on site so far is around $45,000.

Information and legal support

for patients

  • We run websites with information for RD patients:,
  • We prepare legal opinions on regarding access to therapy for Ukrainian patients with chronic diseases and staying in Poland
  • We create printed materials for patients from Ukraine and doctors in Poland who treat them
  • We organize translations of medical documentation from Ukrainian to Polish or English
  • We support patients in legal matters related to their stay in Poland (obtaining a PESEL number, refugee status, etc.)
  • We contact the appropriate offices in Poland to receive the necessary information and answer questions from patients

A Ukrainian-Polish medical dictionary for patients with primary immunodeficiencies

Raising awareness about the situation of RD patients from Ukraine

  • We participated in the meeting of Network of Parliamentary Advocates for Rare Disease of European Parliament (23.03.2022)
  • We had a speech for The Canadian Immunodeficiencies Patient Organization (April 2022)
  • At the invitation of Global Genes we performed in the RARECast podcast hosted by Daniel Levine (May 2022)
  • We took part in an online conference for Ukrainian physicians "Рідкіснізахворювання у дітей" (Children with Rare Diseases) (10.06.2022)
  • We have prepared a video presentation for participants of BIO InternationalConvention (San Diego, June 2022)
  • We spoke at the 11th European Conference on Rare Diseases (28.06.2022)

We appear in front of an international audience, raising awareness about the situation of RD patients from Ukraine

Click to listen to
the podcast!

Listen to the podcast:

Emilia and her parents come from near Lviv. The girl was born with a rare genetic disease: severe combined immunodeficiency (SCID). This is a very serious type of primary immunodeficiency that most often requires a bone marrow transplant in the early months of life.

Emilia was also waiting for it, but in the first days of war the hospital in Kiev where the procedure was to be performed was bombed.

Thanks to our efforts, Emilia came to Poland with her parents and was taken under the care of doctors in a pediatric hospital in Bydgoszcz.

Emilia undergone a successful transplant in the last weeks. She feels fine and is recovering surrounded by family.

This is why your donation matters

There are many more patients like Emily. Your donation can save their lives.

Meet Emily (Емілія)!

The Healthcare Education Institute was established in 2017 on the initiative of Adrian Goretzki, a person with XLA and patient advocate with over 10 years of experience in working for patient communities. In our daily activities, we strengthen the voice of patient communities, educate patient group leaders, create reports, research and studies, all in order to ensure that patients with rare diseases are noticed and receive the best possible medical care.

Since the war broke out, we do everything to support RD patients from Ukraine – both those who flee to Poland and other European countries, and those who decided or being forced to stay in Ukraine. We now have an international team of dedicated volunteers from USA to Ukraine working together to ensure patients' safety and access to treatment.

About the Foundation

We believe that rare means exceptional, not unimportant.

"Patient advocate and lawyer Adrian Goretzki, founder and president of the Healthcare Education Institute in Poland, has also helped families of rare-disease patients cross the border and arrange needed medical care.

His organization assists patients to get them quickly across the border, organizes medical care in Poland, translates medical documents from Ukrainian to Polish or English, and buys medicines and medical equipment for hospitals in Ukraine."

Media about our actions

Erin Durkin, "National Journal", Washington, 4.04.2022

Doctors about our actions

"The war has changed everyone's life! Yet, we are all fighting for the better life! Some people defend us on the frontline, while others provide us with the necessary aid regarding health issues. (…) "Thanks" to all the great people who have sent such a significant support to us. Your understanding and kindness deserve the best praise.”

Veronika Kulchinska, MD, PhD

hospital in Zaliztsi, 6.04.2022

""The administration and the entire team of the Ternopil Regional Children's Clinical Hospital, TOR, express their sincere thanks to our benefactors Healthcare Education Institute from Katowice, Poland, (…) for the charitable assistance provided to the children who are being treated at our medical institution.”

Ternopil Regional Children’s Clinical Hospital


Letter from Ostap Gryshchuk,

the CEO of the hospital in Ivano-Frankivsk with thanks for the provided medical equipment (19.04.2022)

Download the report "6 Months of Support. Report on humanitarian aid for Ukrainian rare disease patients" in English or Ukrainian. You can find there more details, photos, statistics and testimonials of patients and doctors.

You can download the report by clicking the cover.

Do you want to learn more about our activities?

Cooperation and Support

Business Partners and Sponsors

Non-profit organizations

We raised more than 100 000 USD since the war began.

Support us and join those for whom rare means

exceptional, not unimportant.

Donate (PayPal)

You will be redirected to the PayPal donations module.

"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


  • PL (donation in PLN): PL45 1600 1055 1830 5274 2000 0001
  • INT (donation in EUR): PL34 1600 1055 1830 5274 2000 0005
  • INT (donation in USD): PL07 1600 1055 1830 5274 2000 0006

How else can you help?

Tell your friends about our initiative so that more people can support our efforts and that no patient with a rare disease is left without support.

Share our website in social media

Become our sponsor or corporate donor

If you or your company would like to make a corporate donation and it requires an agreement, please let us know. We are a non-profit & VAT-exempted foundation based in Poland (a legal equivalent of US 501(c)(3) organization status).

Contact us

Copyright by Healthcare Education Institute. The Foundation 2022.


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