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Brain-Dead Boy Gives Life To Woman With Rare Heart Disease

Brain-Dead Boy Gives Life To Woman With Rare Heart Disease

20-07-2016

A teenager who was declared brain-dead following a road accident gave life to a 27-year-old woman suffering from a rare disease as his heart was successfully transplanted in her after being transported from Thiruvananthapuram by a Naval Air Ambulance here on Tuesday. A team of doctors at the Lisie Hospital here claimed that they have […]

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Rare Genetic Diseases Diagnosed In A.P. Hospital

Rare Genetic Diseases Diagnosed In A.P. Hospital

15-07-2016

Three persons, including a 15-year-old girl, have been diagnosed at the Government General Hospital here with rare genetic disorders arising out of consanguineous marriages. N.V. Sundarachary, Head of the Department, Neurology, said the two diseases — Wilson’s disease and Leukodystrophy — could be categorised under rare diseases with an incidence of 1-4 in one lakh […]

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Screening For Rare Genetic Disorders At a Point-Of-Click

Screening For Rare Genetic Disorders At a Point-Of-Click

11-07-2016

Fast and accurate diagnosis of disease-causing mitochondrial genetic mutations is now possible thanks to automation of the entire process of data analysis and interpretation by a team of researchers at the Delhi-based CSIR Institute of Genomics and Integrative Biology. The comprehensive pipeline developed by a team led by Dr. Sridhr Sivasubbu and Dr. Vinod Scaria […]

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Scholar Maps Rare Genetic Disorders Across India

Scholar Maps Rare Genetic Disorders Across India

08-07-2016

Blood tears, countless benign tumours in vital organs and accelerated ageing were among the 30 rare genetic disorders that a young doctor-in-the-making has mapped across India as part of her research as a Fulbright scholar. Aditi Kantipuly, a student of medicine at the Johns Hopkins University, has spent the past seven weeks visiting several States […]

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Why People With Rare Diseases Are Writing to PM Modi

Why People With Rare Diseases Are Writing to PM Modi

03-07-2016

He will turn two this October, but unlike other children his age Baby Haadi cannot sit up, make noises or eat. The little boy’s growth is severely delayed as he suffers from Maple Syrup Urine Disease (MSUD) – a genetic disorder which affects one in 1,85,000 newborns in the world. Because of his condition Baby […]

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One man’s fascination with fat

One man’s fascination with fat

06-06-2016

Ram Rajasekharan’s two decades of research is converging in ways that offer hope for commercially viable technologies and products. “This is the world’s tiniest grain”, says Ram Rajasekharan, handing a fistful with a magnifying glass. Under the lens, Teff seeds look oblong and wispy and, like many seeds, harbour a story which is culturally deep […]

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Coverage for 14th May 2016 - MPS Day

Coverage for 14th May 2016 – MPS Day

03-06-2016

Online http://timesofindia.indiatimes.com/city/bengaluru/Rare-disease-patients-gather-for-the-third-time-appealing-for-treatment-to-the-state-government/articleshow/52270406.cms?from=mdr http://epaperbeta.timesofindia.com/Article.aspx?eid=31806&articlexml=Rare-disease-patients-make-a-fervent-appeal-to-15052016005018 http://article.wn.com/view/2016/05/14/Rare_disease_patients_gather_for_the_third_time_appealing_fo/ http://article.wn.com/view/2016/05/14/Rare_disease_patients_make_a_fervent_appeal_to_govt/ http://news.panchamithra.in/rare-disease-patients-make-a-fervent-appeal-to-govt http://www.nyoooz.com/bengaluru/465374/rare-disease-patients-gather-for-the-third-time-appealing-for-treatment-to-the-state-government http://www.nyoooz.com/bengaluru/465757/rare-disease-patients-make-a-fervent-appeal-to-govt http://karnataka.indiaeveryday.in/news-rare-disease-patients-gather-for-the-third-time-appealing-1162-2157451.htm http://realtime.rediff.com/news/meenakshi#!Rare disease patients http://www.thehindu.com/todays-paper/tp-national/tp-karnataka/spreading-awareness/article8602185.ece http://www.newindianexpress.com/cities/bengaluru/When-body-grows-in-fits-and-starts/2016/05/16/article3434338.ece http://www.bnnwebtv.com/admin/health_info.php?recid=445 http://www.newindianexpress.com/cities/bengaluru/When-body-grows-in-fits-and-starts/2016/05/16/article3434338.ece Pharma Biz – http://www.pharmabiz.com/NewsDetails.aspx?aid=95185&sid=2

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Rare disease patients make a fervent appeal to govt   

Rare disease patients make a fervent appeal to govt   

16-05-2016

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Cure is unlikely, Medicines cost Rs. 50L+ a year

Cure is unlikely, Medicines cost Rs. 50L+ a year

16-05-2016

Rare Diseases affect thousands of families in India, and due to the snail’s pace of innovation and research in the country, families often have to watch their loved ones suffer, with many eventually succumbing to their disease Her daughter Kusuma, was only three-years-old when Sudha Rani noticed a boil on her head. Within a few […]

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Rare disease patients gather for the third time appealing for treatment to the state government

Rare disease patients gather for the third time appealing for treatment to the state government

16-05-2016

BENGALURU: Patients suffering from rare Mucopolysaccharidoses and other rare diseases and their families came together to appeal to the state government for providing treatment on the occasion of International Mucopolysaccharidoses (MPS) Day. Dr Asha Benkappa, director of Indira Gandhi Institute of Child Health Hospital (IGICH), said at an event organized by Lysosomal Storage Disorder Support […]

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