Help us supporting rare disease patients from Ukraine!

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.

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 conditio.
We take care of short-term accommodation for the patient's family.
We provide access to treatment in Poland (we cover all procedures and hospitalizations and arrange the first visit to a specialist in a given field).
We stay in touch with patients and monitor their situation. If necessary, we help in arranging further doctors’ appointments.
We offer patients and their family members free psychological care in Ukrainian.
In the case of transit to other European countries, we provide contact to a patient organization in each country as well as to a medical clinic treating a given disease.

We are in constant contact with hospitals treating patients with rare diseases in Ukraine and we determine their needs for medicines and medical equipment.
In response to needs, we organize the transportation 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.
We also deliver power stations for RD patients that allow life-saving devices to work even during power outages.

We run websites with information for RD patients: www.ridkisnikhvoroby.pl and www.imunodefitsyt.pl.
We prepare legal opinions regarding access to therapy for Ukrainian patients with chronic diseases and staying in Poland.
We create educational materials such as information brochures and roadmaps for patients from Ukraine.
We organize translations of medical documents 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.) or obtaining social benefits.
We contact the appropriate offices in Poland to receive necessary information and answer questions from patient.

We participated in the meeting of the network of Parliamentary Advocates for Rare Disease of European Parliament (23.03.2022).
At the invitation of GlobalGenes, we participated in the RareCast podcast hosted by Daniel Levine (May 2022).
We took part in an online conference for Ukrainian physicians called "Рідкісні захворювання у дітей” (Children with Rare Diseases) (10.06.2022).
We have prepared a video presentation for participants of the BIO International Convention (San Diego, June 2022).
We spoke at the 11th European Conference on Rare Diseases (28.06.2022).
We spoke about Ukraine during the Plasma Protein Forum (Washington, 11-12.10.2022).
During the WORLD FOR UKRAINE SUMMIT, together with participants from all over the world, we discussed better humanitarian, social and economic solutions to help Ukraine (Rzeszów, 9.12.2022).

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 months. She feels fine and is recovering surrounded by family.

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.