World Rare Disease Day takes place on 28th February every year. It is celebrated to raise awareness among the public about the rare diseases and their impact on patient's lives. Rare disease is often described as debilitating lifelong disease or disorder with a prevalence of 1 or less, per 1000 population.
The European Organisation for Rare Diseases (EURORDIS) organized the first Rare Disease Day, which took place on February 29, 2008 a ‘rare’ date that happens only once every four years. According to the organization, there has never been a day dedicated to representing those affected by rare diseases.
The theme of this year is "Share Your Colours". This theme appeals to people who are living with a rare disease to share their stories and struggles and encourage everyone to come together and spread awareness.
Rare Disease Day increases awareness in public about the rare disease and motivate researchers and policymakers to attend to the needs of people who are affected by rare diseases. Since the most of rare disease are incurable and because of lack of awareness many people go undiagnosed.
Rare diseases include rare cancers, autoimmune diseases, congenital malformations, and infectious diseases amongst others. As there is no epidemiological data, only 450 rare diseases have been recorded in India from tertiary care hospitals. Rare diseases that are reported are Primary immunodeficiency disorders, Lysosomal storage disorders (Gaucher’s disease, Mucopolysaccharidoses, Pompe disease, fabry disease etc.) Cystic Fibrosis, osteogenesis imperfecta, certain forms of muscular dystrophies and spinal muscular atrophy, etc.
Rare Disease Day participants hold events, gatherings, and campaigns like press conferences, fundraising events, participating in walks. These events are held to encourage social change and bring attention to decision-makers.