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

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

29-06-2017

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 with Aplastic Anemia, we were initially shattered. It took us a while to even understand and accept what was going on. It was Merlyn’s strength […]

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Tamil Nadu set to screen newborns for inborn metabolic disorder

Tamil Nadu set to screen newborns for inborn metabolic disorder

29-06-2017

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 Minister will be implemented on a pilot basis at Vellore, which was chosen as one of the priority areas, officials told Express. At present, there […]

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Rare disease policy yet to see light of the day

Rare disease policy yet to see light of the day

23-06-2017

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 of the state government. Rare disease is a segment of diseases which is still not in the priority list of the government. These diseases are […]

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

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

13-06-2017

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 the Delhi High Court on 25 May. However, they feel that the expensive and prohibitive nature of the treatment with no insurance coverage, untimely diagnosis, […]

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Media Coverage on the National Policy for Treatment of Rare Diseases

Media Coverage on the National Policy for Treatment of Rare Diseases

31-05-2017

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 approved by the government. They have also thrown light on the need for making the policy more patient-friendly. http://indiatoday.intoday.in/story/delhi-high-court-national-policy-for-treatment-of-rare-diseases/1/963897.html http://www.sify.com/news/delhi-hc-directs-centre-to-implement-rare-diseases-policy-news-national-rf0tb9hghgjjf.html http://www.outlookindia.com/newsscroll/delhi-hc-directs-centre-to-implement-rare-diseases-policy/1060681 http://www.aninews.in/newsdetail-Mg/MzE2Mzkw/delhi-hc-directs-centre-to-implement-rare-diseases-policy.html http://www.business-standard.com/article/news-ani/delhi-hc-directs-centre-to-implement-rare-diseases-policy-117052601281_1.html

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Delhi HC directs Centre to implement rare diseases policy

Delhi HC directs Centre to implement rare diseases policy

27-05-2017

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 High Court that the national policy on the treatment of rare diseases has been formulated and draft policy has been approved by the Ministry of […]

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

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

27-05-2017

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 the country. Filing a reply to a query raised by the Delhi High Court, central government standing counsel Shivlakshmi on Friday informed Justice Manmohan that […]

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

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

27-05-2017

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 be provided for free. New Delhi: The government of India has finalised and approved the National Policy for Treatment of Rare Diseases. With an affidavit […]

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Karnataka Doctor Discovers Rare Disorder

Karnataka Doctor Discovers Rare Disorder

24-05-2017

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, from Holalkere in Chitradurga district, studied in Bangalore Medical College in the 1990s and is currently working in Colorado, US. He is said to be […]

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

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

15-02-2017

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 a strong need to rebuild global confidence and trust in doing clinical research in India. This was the unanimous opinion of industry panelists in the […]

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