Key Points
An advocacy group has written to Union Health Minister Mansukh Mandaviya, urging him to issue guidelines to the Centres of Excellence (CoEs) to provide equal weightage to all notified disease conditions, including Fabry disease, under the updated National Policy for Rare Diseases..
As the world commemorated April as Fabry disease awareness month, the patients of this rare yet treatable disease in India are staring at a bleak future, the Lysosomal Storage Disorders Society of India said.. Fabry disease is a part of rare diseases classified under group 3 (a) in the National Policy for Rare Diseases 2021..
Studies on Fabry patients in India have shown that untreated males and females have a reduced life expectancy of 20 years and 10 years, respectively, due to progressive renal, cerebrovascular, and cardiovascular complications, the group said in its letter...
"However, none of the six Fabry disease patients shortlisted for treatment on Ministry of Health's crowd-funding portal has been put on treatment, despite the availability of Rs 50 lakh financial support for treatment of all rare disease patients..
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