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Other RD News

Survey Questionnaire to Set Research Priorities for Liver GSD

Survey Questionnaire to Set Research Priorities for Liver GSD

12-10-2017

  On behalf of the Priority Setting Partnership Steering Group, we would like to share a survey questionnaire to set research priorities for liver GSD. Responding will take you max 5 minutes. We ask only GSD patient (caregivers) and health care providers to answer. https://www.surveymonkey.com/r/IGSDPSP-English  This initiative was presented during the IGSD2017 conference in Groningen. The goal is […]

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Rare Diseases Centre hit by fund crunch

Rare Diseases Centre hit by fund crunch

04-09-2017

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Newsletter from Centre for Eye Genetics and Research

Newsletter from Centre for Eye Genetics and Research

31-07-2017

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Charitable Access Program

Charitable Access Program

24-07-2017

Charitable Access Program application link for 2017 is now activated. The link for the actual application is https://app.wizehive.com/apps/login/shire2017 Click here to download the application instructions. The application deadline is September 3, 2017.

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Innovations in medicine needed to cure rare diseases: Doctors

Innovations in medicine needed to cure rare diseases: Doctors

30-06-2017

Calling for better health research in India, health experts, including those from the All India of Institute of Medical Sciences (AIIMS), on Wednesday said that innovations in medicine alone can help cure rare diseases. Considering India’s population, doctors said that the number of patients suffering from rare diseases was quite significant now. The diseases are […]

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Putting Wheelchair Users Behind the Wheel

Putting Wheelchair Users Behind the Wheel

29-06-2017

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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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