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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, Prasanna Shirol has beed awarded a “Rare Champion of Hope” from “Global Gene” – USA

Nine Individuals and Organizations from Around the World will be Recognized for Their Positive Impact on the Rare Disease Community, Prasanna Shirol has beed awarded a  “Rare Champion of Hope” ...

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Health Minister expedites process of rare disease policy formation

Rare diseases are severe and chronic illnesses and are often life-threatening. Patients suffering from rare diseases, especially Lysosomal Storage Disorders (LSDs), often lead a very incapacitating life With the new...

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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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Years with Cystic Fibrosis

I vaguely remember my childhood and I remember the episode of breathlessness, coughing, getting tired, waking up early and lot of stomach upset. And in my school years, I remember few...

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The CCD is awarding grants of Rs. 15 lakhs to further innovative scientific research towards treatment of GNE Myopathy

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