Observed annually on the last day of February, Rare Disease Day was established in 2008 to spotlight conditions that, though individually rare, collectively impact over 300 million people worldwide. Among the 7,000+ documented rare diseases—each a testament to life’s fragility and diversity—are disorders like ALS, Osteogenesis Imperfecta, and Epidermolysis Bullosa. These poetic names mask relentless struggles: lives defined by pain, uncertainty, and battles against time.  

Rare diseases are not defined by their obscurity but by systemic neglect. Diagnoses are often delayed due to symptom ambiguity, while limited research and prohibitive treatment costs leave many without hope. Yet within this adversity lies extraordinary resilience. Patients and families defy limitations, advocating not just for survival but for dignity and visibility. Rare Disease Day urges us to move beyond statistics—to see the people behind the diagnoses and ensure their stories fuel global action.