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Bengaluru: About 20-years ago, when a doctor had told Narasimha Kamath and Sneha Kamath that their child, Sarthak Kamath was suffering from a rare disorder called Duschenne Muscular Dystrophy (DMD), they had gazed at the skies in despair and questioned ‘Why Us?’ Very little did this couple from Kasargod, settled in Bengaluru know that this […]
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 […]
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 […]
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
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 […]
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 which only grew with each passing day. On the fifty-eighth day after her birth, doctors […]
Kochi, Kerala, India.