Totally 34 patients were treated for rare diseases such as MPS II, Gaucher, Atypical HUS, DMD, Tyrosinemia type-1, Adrenoleukodystrophy and others. | Latest News Delhi
The Central Government on Wednesday said that Rs 40 crore has been released to 11 centres of excellence including Rs 10 crore to All India Institute of Medical Sciences (AIIMS) for treatment of rare diseases.
Get latest articles and stories on India at LatestLY. A short affidavit was filed on behalf of the Ministry of Health in the batch of Petitions filed by children Suffering from Rare diseases who sought direction for free treatment. Justice Prathiba M Singh said, "The ongoing treatment of the children should not be stopped due to funds." India News | Centre Releases Rs 40 Cr for Treatment of Rare Diseases, AIIMS Gets Rs 10 Crore.
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Patient advocacy groups seek more funds for treatment of rare diseases
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‘Focus on research will help to cut the cost for healthcare systems’
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‘Focus on research will help to cut the cost for healthcare systems’
On Rare Diseases Day which fell on Sunday, stakeholders demanded more funds for treatment of patients afflicted with known rare diseases, besides more research.
According to the Indian Society for Clinical Research, there are 7,000 known rare diseases that have affected 300 million people across the globe. Of them, 70 million are in India, and most have no or very limited treatment options.
Society president Chirag Trivedi said one in 20 persons would live with a rare disease at some point in life. A large number of patients had no access to appropriate diagnosis or treatment. “This should be a wake-up call for clinical researchers,” he said. Focus on research could reduce the cost for healthcare systems and improve the qua