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Blog: I Lost My Wife To A Rare Disease. This Is How It Changed Me

My wife Merlyn Joseph was a positive person. She would never sit and grieve when faced with trouble. She knew how to laugh when in pain. After she was diagnosed...

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Tamil Nadu set to screen newborns for inborn metabolic disorder

CHENNAI: Tamil Nadu will soon screen its new-borns to find out children with inborn errors of metabolism, the first-of-its-kind effort in the State. The programme sponsored by the Union Health...

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Rare disease policy yet to see light of the day

JAIPUR: A policy proposal for diagnosis and appropriate treatment of rare diseases was submitted in 2015, but it is yet to see the light of day owing to the apathy...

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‘National policy for rare diseases a welcome step, challenges ahead’

Experts have welcomed the government’s decision to approve the National Policy for the Treatment of Rare Diseases, the draft of which was submitted by the Union Ministry of Health to...

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Media Coverage on the National Policy for Treatment of Rare Diseases

Below are the prominent websites informing us the National Policy for Treatment of Rare Diseases. The stories have highlighted the fact that the policy has been https://healthsavy.com/product/cipro/ approved by the...

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Delhi HC directs Centre to implement rare diseases policy

May 26 (ANI): The Delhi High Court on Friday directed the Centre to forthwith implement national policy for treatment of rare diseases. The Central Government standing counsel today informed the...

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Delhi HC directs Centre to implement National Policy for Treatment of Rare Diseases

The battle which began in 2013 with Mohd. Ahmed case, has been taken forward by social jurist Advocate Ashok Agarwal that resulted in the formulation of a landmark policy for...

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Government Submits Rare Disease Policy to Delhi HC, Recommends Rs 100 Crore for Genetic Diseases

n November 2016, the Delhi high court had ordered the government to finalise a policy on rare disease as patients repeatedly petitioned the court asking that the expensive drugs required for treatment...

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Karnataka Doctor Discovers Rare Disorder

In a proud moment for the Indian research community, a rare congenital condition is set to be named after a Karnataka doctor. It’ll be called Nallegowda Syndrome. Dr Mallikarjun Nallegowda,...

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Need to build global confidence & trust in clinical research in India

Given all the recent changes in the regulatory environment in the recent past and the regulators’ commitment to a creating a favourable clinical research environment in India, there is now...

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