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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

With the idea of raising awareness for people living with a rare disease, an official video marking the World Rare Disease Day-2022 falling on February 28 was globally launched on January 31. The awareness campaign is jointly supported by 67 National Alliance patient organisations from across 59 countries including the Indian Organisation for Rare DiseasesRead more

In a historic first, the UN General Assembly adopted a resolution for “Addressing the challenges of persons living with a rare disease and their families” at its 76th Session on December 16, 2021. The landmark resolution – which calls UN member states to achieve universal health coverage by 2030 for all including persons living withRead more

The Ataxia Awareness Society (AAS) – an NGO dedicated to spread awareness about the rare disease, help the sufferers and encourage research in this field – is organising a webinar on Ataxia on 18th December (Saturday) at 7:30 PM IST. Being organised in collaboration with the Indian Organisation for Rare Diseases (IORD) & AAS, theRead more

Living with Isaac Syndrome – known to be having less than 40 recorded cases in India as quoted in this article – came along with baggage of issues for Rare Disease survivor Rachit Shah, throwing his life into a chase for treatment & recovery from the rare disease. Diagnosed in 2016 with Issac Syndrome (alsoRead more

In what can be termed as a promising development for the rare disease community, a pilot study of rare undiagnosed diseases has shown that the Whole Genome Sequencing improves diagnosis by 25%. In this pilot study, the researchers from the University of Exeter, Genomics England and Queen Mary University of London pooled genes of 4,660Read more

It is a herculean task to get insurance cover for rare diseases as they don’t usually exist for such patients. With over 7000-8000 rare diseases, some of which have a costly treatment protocol while many others have no available cure at all, it becomes all the more difficult. Here is a news story that mayRead more