Knownotherwise as Kleine-Levin Syndrome (KLS), Sleeping Beauty Syndrome is known tobe one of the extremely rarest of rare diseases with medical literaturerecording only about 500 cases around the worl
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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
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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 India
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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 Mod
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With theidea of raising awareness for people living with a rare disease, an officialvideo marking the World Rare Disease Day-2022 falling on February 28 wasglobally launched on January 31.The awarenes
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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
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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 De
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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 l
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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
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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 ma
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In a first, Indian Organization for Rare Diseases has initiated setting up of a Patient Support Group for Congenital Ichthyosis with all key stakeholders - patients, caregivers & patients' kin.How
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State Senate Leaders Join Community Campaign Celebrating Indian-American ContributionsMinnesota, August 15, 2021: In a remarkable move, the Minnesota State House and Senate have come together to intro
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