On February 28, 2025, UCIBIO joins the global community in recognizing Rare Disease Day, a worldwide movement dedicated to raising awareness and advocating for equity in healthcare, diagnosis, and treatment for the 300 million people living with a rare disease, as well as their families and caregivers.
Established in 2008, Rare Disease Day has played a pivotal role in uniting a diverse and global rare disease community. The initiative, led by EURORDIS in collaboration with over 70 national patient alliances, is acknowledged annually and symbolically on February 28 (or February 29 in leap years – the rarest day of the year). It serves as a focal point for advocacy at local, national, and international levels, mobilizing individuals, healthcare professionals, researchers, policymakers, and industry representatives to take action for this vulnerable population.
There is at least one rare disease for every letter of the alphabet, and for some letters, there are dozens - each distinct, yet almost always devastating. On the day of diagnosis, both the patient and their family experience a profound transformation. Some questions find answers, while others will remain unresolved indefinitely. Many of these rare diseases lack available treatments and receive little attention from the pharmaceutical industry. As a result, it falls to academic researchers to sustain scientific inquiry, nurture hope, and create the possibility of a better future for these families, who face immense challenges every day. With commitment and dedication, UCIBIO contributes to this mission, working to expand scientific knowledge, foster innovation, and ultimately improve the lives of those affected by rare diseases.
As we mark Rare Disease Day 2025, UCIBIO reaffirms its dedication to this field, joining the global effort to raise awareness, drive scientific progress, and advocate for a more equitable future for all.
Video by the Mitochondria and Neurobiology Research Lab Team
Video by the Glycoimmunology Research Lab Team
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