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Article published in “Indian Express” on 10th Feb 2021 about ORDI – Race for 7. This 6th edition and is Virtual this year

Race for 7 is an annual mass “Awareness Run/Walk/Ride” being organised on “World Rare Disease Day” on  28th February 2021 at 6.30 am....

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Opinion: Genetic testing is key in diagnosing rare diseases

A genetic disease occurs because of a change or alteration in the DNA, writes a clinical geneticist. The parents of a two-year-old boy brought to our genetics clinic in Manipal...

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Two brothers with rare disease move HC for direction to Centre, AIIMS to give free treatment

The two children, who are two and three years old respectively, are suffering from Mucopolysaccharidosis II or MPS II (Hunter Syndrome, Attenuated Type) which is a rare disease. NEW DELHI:...

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Kerala Government offer help to bedridden youth

Click below link to know more information https://timesofindia.indiatimes.com/city/thiruvananthapuram/kerala-government-offers-help-to-bedridden-youth/articleshow/80719363.cms...

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5L patients of rare disease, treatment costs in crores; govt lacks budget: HC told

New Delhi, Feb 4 () The Delhi High Court was informed on Thursday by the Ministry of Health that there are over five lakh patients suffering from rare disease Duchenne...

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Don’t have funds to treat 5 lakh suffering from rare form of muscular dystrophy, health ministry tells HC

The Centre on Thursday informed the Delhi high court that it does not have the budget to treat over five lakh people suffering from a rare disease, Duchenne muscular dystrophy...

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Need of rare disease policy

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Awareness for Alport Syndrome

Help us Raise Awareness for Alport Syndrome, a Rare Inherited Disorder that progressively affects the life of those affected. Care for Rare, Participate in spreading awareness and...

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Finalise policy on rare diseases by March 31 published in Thehindu

In draft policy govt. has proposed crowd-funding for treatment of high-cost rare diseases The Delhi High Court on Thursday directed the Centre to finalise the National Health Policy for Rare...

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Woman Undergoes Robotic Surgery For Rare Disease In Delhi

Click Below Link https://www.ndtv.com/india-news/woman-undergoes-robotic-surgery-for-rare-disease-in-delhi-2360115 The patient presented with a history of hoarseness of voice and swelling in the neck that had developed two months ago, according to Arun Prasad, a...

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