The Year 2024 of Rare Diseases and Rare Diseases in India

Rare Disease Day is marked on the final day of February each year. The World Health Organization (WHO) states that there are one or fewer uncommon illnesses for every 1,000 people.
In contrast to other common diseases in the general population, a rare disease is a health condition with a low prevalence that affects a limited number of people.

Rare Diseases Europe is a non-profit association of over 1000 rare illness patient organizations from 74 countries that collaborate to better the lives of individuals living with rare diseases worldwide.

India is responsible for one-third of worldwide uncommon illness incidence with over 450 diseases recognized.

Less than half of the 450 uncommon diseases discovered in India can be treated.

Only about 20 uncommon diseases have treatments approved by the Drugs Controller General of India (DCGI), which are only available at Centre of Excellence (COES).

Because Centre of Excellence (COES) are few (12) widely located and uncoordinated, late diagnosis, ineffective therapy and a lack of timely availability are common.

It takes an average of seven years to diagnose their disease.

In general, physicians do not know how to interpret the indications and symptoms.

Expectant mothers with a history of rare diseases in their family must undergo mandatory prenatal screening and post-natal diagnosis and care.