Alyona Alyona — the voice of rare disease patients in Ukraine.

In 2026, Ukrainian rapper alyona alyona became an ambassador for patients with rare diseases in Ukraine.

This is not the first time the singer has shown such sincerity and courage in speaking about the challenges faced by a specific group of people. Five years ago, alyona alyona had already become a voice for patients with rare diseases. We are truly grateful to once again receive genuine support for the patient community.

The talented artist has helped make the voices of rare disease patients louder.

Rare diseases often go unnoticed — not because they do not exist, but because they are simply not expected to be seen. There is a well-known saying: when you hear hoofbeats, you think of a horse, not a zebra. This is how medicine often works as well. Doctors first look for the most common causes. But for thousands of Ukrainian families, the zebra is their reality. It is a long journey to diagnosis. It is a struggle for treatment. It is the daily effort to be heard and seen.

That is exactly what inspired the Union of Rare Diseases of Ukraine to create this video featuring alyona alyona and our wonderful patients — about people who can no longer remain unnoticed. Because rare does not mean invisible. And every “zebra” deserves to be seen.

Watch the video