Rare Disease Day 2023: Know all about the day and its significance

Rare Disease Day takes place worldwide, typically on or near the last day of February each year. This year, the day will be celebrated on February 28.

The goal of Rare Disease Day is to increase public awareness of rare diseases while encouraging researchers and policymakers to address the needs of those living with rare diseases.

An average of 1 in 20 people live with a rare disease at least once in their lifetime, and few of them see any sign of a cure. According to the World Health Organization (WHO), the basis of a rare disease can be identified with its epidemiology. The frequency of any rare disease should be less than 6.5-10 per 10,000 people.

About half are children, and 95 percent of the conditions do not have FDA-approved treatments.

Founded by the European Organization for Rare Diseases, the first Rare Disease Day was celebrated in 2008 on February 29.

An Indian non-profit company, Organization for Rare Diseases India (ORDI), is set up to provide a collective voice for all Indian patients with rare diseases. Given India's enormous population, ORDI considers an illness rare if it affects one in every 5,000 Indians or less. ORDI has listed 263 rare diseases in India.

These diseases often involve severe, progressive illness and disability and may lead to premature death. In addition, rare diseases frequently affect more than one organ system and require collaborative research structures. Furthermore, being very rare, the treating healthcare team often misdiagnoses the patients due to overlapping symptoms seen with the more common (non-rare) diseases.