1 in 20 Indians Battles Rare Diseases: Awareness Emerges as Key First Step
Dr. Sudheendra Rao N R highlights that 70 million Indians, mostly children, face rare genetic conditions, stressing awareness to cut diagnosis delays.
Rare diseases, though individually uncommon, collectively impact a staggering number of lives in India. According to Dr. Sudheendra Rao N R, Scientific Advisor at the Organization for Rare Diseases India (ORDI), approximately 1 in 20 Indians—around 70 million people—are affected, with a majority being children. Over 7,000 rare diseases exist globally, many genetic in origin, including inherited cancers, metabolic disorders, and congenital conditions. About 80% stem from single-gene mutations, with half appearing at birth and others manifesting later.
In India, the burden is amplified by factors like consanguineous marriages and genetic founder effects, contributing to higher prevalence in certain communities. Globally, rare diseases affect around 350 million people, with comparable figures in the US and Europe. The “silent crisis” often leaves families facing prolonged uncertainty, as patients embark on a “diagnostic odyssey” lasting five to seven years on average, consulting multiple specialists and undergoing repeated tests.
Diagnosis remains challenging due to the rarity of each condition and limited awareness among healthcare professionals. Symptoms that don’t fit common patterns delay recognition, sometimes allowing irreversible progression before intervention is possible. This not only imposes emotional strain but also heavy financial costs on families and the healthcare system.
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Treatment gaps persist, with only about 5% of rare diseases having approved therapies worldwide, and costs for available orphan drugs—like enzyme replacement therapies—running into lakhs annually per patient. In India, access relies partly on charitable programs or crowdfunding, which offer limited relief. While over 1,300 orphan drugs are approved globally and more in development, most patients still lack specific treatments.
Awareness stands out as the most immediate “cure,” empowering clinicians to spot red flags like developmental delays or unexplained symptoms, prompting timely genetic testing and referrals. It also fuels public support, reduces stigma, and pushes policymakers toward better funding, newborn screening, registries, and research incentives. Ultimately, heightened awareness can shorten diagnosis times, improve care, and enhance quality of life for millions.
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