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Treatment of rare diseases: Govt demands more fund

Kochi: Seeking more fund to assure treatment to rare diseases, Kerala Social Security Mission submitted an affidavit before the High Court. The affidavit noted that around Rs 50 crore is...

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Unhealthy policies

Instead of banking on uncertain sources for funds, government must increase allocation for healthcare.   Women at a rural pregnancy clinic in Adapur, Bihar.Shutterstock Ablinkered vision can be fatal. Nowhere...

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Centre’s rare disease policy Rs.15-lakh aid a mockery , say patients

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Govt’s Reluctance to bear cost irks rare disease patient’s kin

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India to launch its 1st human genome cataloguing project

Department of Biotechnology to rope in 22 partners for project that will help develop better therapies. MUMBAI: India will launch its first human genome mapping project by October, a move...

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#RareDiseases – Cure SMA India speaks for people with spinal muscular atrophy in many ways

As part of our July campaign, #RareDiseases, today we look at Spinal Muscular Atrophy, SMA, a genetic disorder that affects the motor capabilities. Cure SMA Foundation of India, a community...

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Wanted: A policy for the ‘invisible’ rare diseases community

Earlier this month, Union Health Minister Harsh Vardhan chaired a high-level review meeting on non-communicable diseases. Also on the agenda was the reformulation of the national policy for treatment of...

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2019 Global Genes RARE Champion of Hope Award Recipients Announced

Nine Individuals and Organizations from Around the World will be Recognized for Their Positive Impact on the Rare Disease Community ALISO VIEJO, Calif., June 25, 2019 /PRNewswire/ —Global Genes®is pleased...

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Wanted: A policy for the ‘invisible’ rare diseases community

Earlier this month, Union Health Minister Harsh Vardhan chaired a high-level review meeting on non-communicable diseases. Also on the agenda was the reformulation of the national policy for treatment of...

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Pompe patients in Kerala awaiting treatment despite judicial intervention

The Government of Kerala had initially identified 3 nodal centers for the treatment of rare diseases across Kerala and additionally sanctioned an initial corpus of 50 Lakhs to initiate the...

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