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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