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Disabled Children Are Giving Up On Their Dreams,’ Ruchita’s Fight For Accessible Infrastructure At Schools

A 21-year-old fighting battle with a rare genetic disease calls for an inclusive infrastructure in schools and colleges for the disabled. Access to education for disabled students has become challenging....

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Preethu, who conquered SMA by becoming a CA, is no more

Kochi: Preethu Jayaprakash, 28, who became a Chartered Accountant by fighting the permanent disability arising out of the rare genetic disorder Spinal Muscular Atrophy (SMA), finally succumbed to her injuries...

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News Letter May 2022

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Government’s crowdfunding plan for treating patients with rare diseases yet to take off

The total amount of donations channelled to the rare diseases portal is Rs 1.18 lakh till date, Bharti Pravin Pawar, minister of state for health and family welfare, told the...

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News Letter April 2022

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Pfizer announces phase 3 trial of Duchenne muscular dystrophy treatment

Pfizer revealed plans to open sites in the U.S. for a phase 3 study evaluating an investigational mini-dystrophin gene therapy in ambulatory patients with Duchenne muscular dystrophy. The announcement comes...

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Tollywood’s young sensation Nikhil Siddhartha’s father Shyam Siddhartha passed away on Thursday due to a rare disease, Cortico Basal Degeneration.

Nikhil Siddhartha’s Father Passes Away; Actor Says ‘hope We Meet Again’ In Emotional Note Tollywood’s young sensation Nikhil Siddhartha is devastated after the demise of his father Shyam Siddhartha. His father passed away on...

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Off Balance

In places like Saharanpur and Buldhana, a rare genetic disease has been taking away control of bodies, lives and livelihoods from entire neighbourhoods. Against all odds, a few scientists and...

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MedGenome launches AI-enabled VarMiner to detect genetic variants for rare diseases, inherited cancers

The genomic research company claims that VarMiner is powered by certain tools and databases to provide deeper insights into genetics with extreme accuracy and efficiency. MedGenome Labs, a genomics research...

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ORDI March 2022 Newsletter

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