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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