Illya's story: Helping Patients with Rare Diseases in Ukraine

When the war in Ukraine left Illya without his vital medication, our European Union-funded team was there to help.

The Mykolaiv region in the south of Ukraine is one of the most affected areas by the Russian invasion, which began in February 2022. People face challenges obtaining basic and specialised medical care, especially near the frontline. The situation is particularly challenging for patients with chronic or rare diseases.
Orphan diseases (a term used to denote neglected diseases and often used as a synonym for rare diseases), affecting only 6–8% of the global population, present a particular concern. Approximately 50% of those affected globally by such diseases are children. Effectively managing patients with orphan diseases involves undergoing specific therapies regularly, which improves both life expectancy and the overall quality of life. Unfortunately, the conflict in the region has posed several challenges to patients living with such diseases, including running out of essential medications, logistical hurdles and a lack of access to the necessary medications. These challenges have worsened their chronic conditions.

Illya is a 14-year-old boy from a low-income household who lives with his mother in Mykolaiv city. He was diagnosed with Gaucher disease (a rare genetic disorder) as a child. To slow down the progression of the disease and to prevent complications, he needs to take medications regularly. But he ran out of medicines during the war, and the family didn’t get any support from the government, as all government resources were allocated to the fighting. And Illya could not purchase the medicines in bulk as they were too expensive.

Recognising the urgent need for cash assistance, the Mykolaiv Regional Department of Health reached out to International Medical Corps for help. We conducted a careful analysis to identify patients most in need of support. After a thorough evaluation, we selected 49 patients with chronic conditions who did not have the financial resources to seek treatment externally and provided them with cash. Illya was one of them. With the money he received from us, he could purchase his medication.

The cash assistance provided by International Medical Corps has supported our family in purchasing the much-needed medicines for my son, and he can continue his treatment without delay.


Illya’s mother, Natalya Oleksienko, expressed her gratitude to International Medical Corps for the opportunity to purchase medicines for her son, enabling him to lead a healthy life. “The cash assistance provided by the organisation has supported our family in purchasing the much-needed medicines for my son, and he can continue his treatment without delay.”