The following is an excerpt from a panel discussion on Zee Telugu on Muscular Dystrophy featuring medical experts and members of the BharathMD Foundation, a parent advocacy organization for Muscular Dystrophy. The insights shared during this discussion highlight the importance of awareness, early diagnosis, and access to resources for families navigating the challenges of MuscularRead more
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The GST Council in its 50th meeting on exempted the Integrated Goods and Services Tax (IGST) on medicines and Food for Special Medical Purposes (FSMP) used for personal use & treatment of rare diseases enlisted under the National Policy for Rare Diseases, 2021. The meeting was chaired by Union Finance and Corporate Affairs Minister SmtRead 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