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ORDI News

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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Policy shame: sick, rare and ignored

Policy shame: sick, rare and ignored

07-03-2016

If the Indian government is serious about its commitment to realise the rights of its citizens to universal and equitable health care, it cannot ignore rare diseases. The draft National Health Policy, 2015, makes no mention of them Rare diseases are a diverse set of over 7,000 different conditions that afflict an estimated 1 in […]

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Rare Disease Day – You Are Not Alone

Rare Disease Day – You Are Not Alone

01-03-2016

A rare disease is any condition which affects very few individuals in a vast population. Though at present there is no universal definition for it. World Health Organization (W.H.O.) has suggested that a rare disease should be defined as one with a frequency less than 6.5 – 10 per 10,000 people. But the occurrence and […]

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Media Coverage - Race For 7

Media Coverage – Race For 7

01-03-2016

Mainline Coverages Vernaculars- Listings Post Event Race for 7 Online Coverage 1. https://globalgenes.org/raredaily/organization-for-rare-diseases-india-celebrates-world-rare-disease-day-with-race-for-7-marathon/ 2. https://citynewsforu.wordpress.com/ 3. http://pressreleasewatch.blogspot.in/2016/02/run-for-rare-disease-patients-in.html?utm_source=dlvr.it&utm_medium=twitter

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PRESS RELEASE- Race for 7- Race Against Rare Diseases

PRESS RELEASE- Race for 7- Race Against Rare Diseases

22-02-2016

Race for 7- Race Against Rare Diseases Race for 7 to make the voice of rare diseases heard Bengaluru, February 19, 2016: The Organization for Rare Diseases India (ORDI), a patient centered non-profit organization today announced Race for 7, a unique first of its kind event being held to commemorate Rare Disease Day and draw […]

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Media Coverage of ORDI Conference in Mainline Publications

Media Coverage of ORDI Conference in Mainline Publications

22-02-2016

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