Rare Disease Day is observed annually on the last day of February, emphasising the unique challenges faced by individuals living with rare diseases and advocating for greater support and awareness. Coordinated by the National Organisation for Rare Disorders (NORD) in the United States and EURORDIS (Rare Diseases Europe) globally, Rare Disease Day aims to unite patients, caregivers, healthcare professionals, researchers, and policymakers in a collective effort to address the needs of the rare disease community.
Rare diseases, often referred to as orphan diseases, individually affect a small number of people, but collectively, they impact millions worldwide. Many rare diseases are genetic, chronic, and life-threatening, posing significant challenges in terms of diagnosis, treatment, and support.
On Rare Disease Day, events, campaigns, and initiatives are organised to raise awareness about specific rare diseases and the broader issues faced by those affected. The day serves as a platform to advocate for research, better healthcare access, and improved social support networks for individuals living with rare diseases and their families. Through increased awareness and understanding, the hope is to create a more inclusive and supportive environment for the rare disease community.
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