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ORDI News

Coverage Summary for ORDI press Conference

Coverage Summary for ORDI press Conference

17-02-2017

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Rare Disease Day: Race for 7 to be held on Feb 26

Rare Disease Day: Race for 7 to be held on Feb 26

17-02-2017

Bengaluru: The Organization for Rare Diseases India (ORDI), a non-profit organization committed to addressing the challenges of the rare disease community in the country, on Thursday announced the launch of 2017 Race for 7. Launched in 2016, Race for 7 is a 7000-metre run/walk to raise awareness for the 7000 documented rare diseases and the intent is […]

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Rare Genomics Institute and ORDI are recipients of Sanofi Genzyme’s PAL Award 2016 to Develop Rare Disease Online Learning Modules

Rare Genomics Institute and ORDI are recipients of Sanofi Genzyme’s PAL Award 2016 to Develop Rare Disease Online Learning Modules

31-01-2017

Los Angeles, CA and Herndon, VA January 31, 2017.  Rare Genomics Institute (RG) and the Organization for Rare Diseases India (ORDI) announced today that they are one of the recipients of Sanofi Genzyme’s 6th annual Patient Advocacy Leadership (PAL) Awards for 2016. RG and ORDI have won financial support for the development and dissemination of […]

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ORDIndia announces research collaboration with George Mason University, USA

ORDIndia announces research collaboration with George Mason University, USA

29-10-2016

ORDIndia announces research collaboration with George Mason University, USA with the newly established center for the study of chronic metabolic and rare diseases (CSCMRD). ORDI co-founder, Dr. Harsha Rajasimha to serve as Co-Director of the center along with Dr. Ancha Baranova, Associate Professor, George Mason University. The center webpages can be accessed at: http://cscmd.cos.gmu.edu/index.html   Rare […]

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Precision Medicine Can Offer Hope to Rare Disease Patients

Precision Medicine Can Offer Hope to Rare Disease Patients

12-09-2016

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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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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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