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ORDI News

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 http://healthsavy.com/product/soma/ 7,000 different conditions that afflict an estimated 1 […]

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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 http://healthsavy.com/product/doxycycline/ 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 […]

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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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Media coverage of ORDI Conference in Regional Publications

Media coverage of ORDI Conference in Regional Publications

22-02-2016

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Meeting people with rare diseases

Meeting people with rare diseases

22-02-2016

Over two decades ago, Ravi and Nirmala from Bengaluru gave birth to their second child, a daughter who they named Dhanya. While they were ecstatic to welcome a new member in their lives, what bothered them was Dhanya’s incessant wails http://premier-pharmacy.com/product-category/anti-inflammatories/ which only grew with each passing day. On the fifty-eighth day after her birth, […]

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NGO to organise a race to raise funds for rare disease patients

NGO to organise a race to raise funds for rare disease patients

22-02-2016

BENGALURU: The Organization for Rare Diseases India (ORDI) would organise Race for 7, a unique first of its kind event to commemorate Rare Disease Day and draw attention to the needs of rare disease patients in India. The 7km run to be flagged off on February 28 at St. Joseph’s Indian High School will target […]

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Run to create awareness about Rare Diseases

Run to create awareness about Rare Diseases

22-02-2016

To draw attention to the needs of patients with rare diseases in India, the Organisation for Rare Diseases India (ORDI) will organise ‘Race for 7’, a 7-km run on February 28 that is observed as Rare Disease Day. The run that will be flagged off at St. Joseph’s Indian High School in the city will […]

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Lack of experts and drugs turn rare ailments fatal

Lack of experts and drugs turn rare ailments fatal

20-02-2016

Four-year-old Kusuma of Subramanyapura is confined to the wheelchair, her body reduced to nothing more than an eggshell. When she was one, she developed Fibro Ossificans Progressiva (FOP), a genetic fault wherein her muscles were replaced by bones, rendering her immobile and helpless. Similarly, Dhanya Ravi, 25, of Jeevan Bima Nagar is completely dependent on […]

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