Rare Disease Day 2025 official video

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This year’s Rare Disease Day video highlights the inspiring journeys of four families from across the globe, united by their experiences of living with rare diseases.

- Meet Ava from Australia, diagnosed with Maple Syrup Urine Disease (MSUD) as a newborn, whose family navigates life with a strict dietary regimen to keep her healthy.

- From Rwanda, Manzi shares the story of his son Algas, who has Williams syndrome. Together with his wife, Solange, they founded Centre-Alliance to support children with rare conditions.

- Radost from Bulgaria was diagnosed with metastatic Ewing Sarcoma at age 16. Despite undergoing intense treatment far from home, she continues to pursue her passions, from caring for animals to learning new languages.

- Charo, 11, from Argentina, lives with Syngap1, a rare neurological condition. Communicating through an electronic device, she finds joy in music and horseback riding, while her family advocates for awareness and support.

Watch, share, and support Rare Disease Day 2025. Subtitles are available in over 50 languages!

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More on the campaign

Every year this global, patient-led awareness campaign brings together millions worldwide in solidarity with the rare disease community. In 2024, thousands of events took place in over 100 countries, mobilising people living with a rare disease and their families, healthcare professionals, policy and decision-makers, and industry and company representatives. We hope that this will grow even more in 2025!

#RareDiseaseDay is organised by EURORDIS-Rare Diseases Europe and more than 70 National alliance partners.