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There seem to be wide gaps in the FDA approval process as clinical trials data of 220 approved Orphan Drugs for rare diseases go missing in the US-based public registry ClinicalTrials.gov, finds a new study by three Indian researchers. The research study was undertaken by a three-member team of Mohua Chakraborty Choudhury, Indraneel Chakraborty andRead more

Known otherwise as Kleine-Levin Syndrome (KLS), Sleeping Beauty Syndrome is known to be one of the extremely rarest of rare diseases with medical literature recording only about 500 cases around the world.  In this rare condition, the body craves excessive sleep for 15-20 hours (hypersomnolence or hypersomnia) and overeating (compulsive hyperphagia) with accompanying neurological tendenciesRead more

Despite being born with the rare genetic disorder Duchenne Muscular Dystrophy (DMD), 15-year-old K S S R A Praneeth managed to carve a niche for himself in chess for the disabled. He is a former junior national chess champion for the disabled and has been awarded a special prize for his ‘skills’ in the BrilliantRead more

The Indian Organization for Rare Diseases (IORD) is thrilled to call attention to the Word Rare Disease Day-2022 by organizing series of events to raise awareness about the issues of millions of Indians living with a rare disease. The World Rare Disease Day is observed every year on the last day of February (28th February).Read more

Reproduced below is the letter written to Prime Minister Shri Narendra Modi ji by IORD requesting for inclusion of World Rare Disease Day as a topic in the upcoming Mann Ki Baat Dear Shri Narendra Modi ji Sir, Sub: Request Prime Minister Shri Narendra Modi Ji to speak to the nation on the occasion ofRead more