Help for Ukraine
Humanitarian aid for Ukrainian rare disease patients
Starting the day the war broke out, we supported patients with rare diseases who fled the horrors of war. We helped them both in Ukraine and after they reached Poland. Within two years, it went from an ad-hoc project to a well-thought-out system of organized support with a dedicated team responsible for specific actions.
How did we support rare disease patients from Ukraine?
Our work was based on four main areas of activity:
1. Helping patients fleeing the war in Ukraine
We provided patients with support at every stage of their journey to Poland or other European countries. In the first months of war we organized humanitarian corridors to ensure faster border crossings for patients in serious condition. We took care of short-term accommodation for the patients’ families and provided access to treatment in Poland (we covered all procedures and hospitalizations and arranged the first visit to a specialist in a given field). We also stayed in touch with patients and monitor their situation. If necessary, we helped in arranging further doctors’ appointments. And last but not least, we offered patients and their family members free psychological care in Ukrainian.
2. On site support for the Ukrainian patients and medical community
We were in constant contact with hospitals treating patients with rare diseases in Ukraine and we determined their needs for medicines and medical equipment. lIn response to them, we organized the transportation of medicines and medical equipment to specific hospitals. Many of these shipments contained specialized products or equipment needed to treat specific rare diseases, e.g. primary immunodeficiencies, spina bifida, or cystic fibrosis. If the situation required it, we financed the purchase of medicines on the spot. We also delivered power stations for RD patients that allow life-saving devices to work even during power outages.
3. Information and legal support for patients
We prepared dedicated websites with information for RD patients and legal opinions regarding access to therapy for Ukrainian patients with chronic diseases and staying in Poland. We created educational materials such as information brochures and roadmaps for patients from Ukraine. We organized translations of medical documents from Ukrainian to Polish or English. We supported patients in legal matters related to their stay in Poland (obtaining a PESEL number, refugee status, etc.) or obtaining social benefits. We contacted the appropriate offices in Poland to receive necessary information and answer questions from patient.
4. Raising awareness about the situation of RD patients from Ukraine
We participated in numerous meetings and conferences where we discussed the needs and challenges of Ukrainian patients with rare diseases in order to raise awareness in society about their difficult situation. We cooperated closely with other patient organizations to work out the best solutions for patients. We also conducted survey among patients to better understand their situation and adapt our humanitarian activities to their needs and we launched the project "Brave RARE Ukraine" aimed at raising awareness of the needs of rare disease families from Ukraine who have been affected by the Russian aggression. We recorded the videos with stories of Ukrainian patients and their families.
Full summary of our activities
You can download and read the report summarizing two years of our assistance in English, Ukrainian, or Polish by clicking on the respective covers. Here, you'll discover more details, photos, statistics, and patient testimonials.
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Summary in video format
We also invite you to watch a video summarizing the first year of our humanitarian activities for Ukrainian patients with rare diseases, which was created in February 2023.