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Dravet Syndrome Awareness Day

   We appreciate the kind assistance of Ms. Sailakshmi Iyer, Ms. Anandi Shivaram, and Ms. Dhanushya, MSc BMG,  VIT, Vellore for the poster on Dravet Syndrome Awareness.   Visit This...

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Covishield vaccine carries slightly higher risk of bleeding disorders:

Reports of rare clotting and bleeding disorders in younger adults, some fatal, led a number of countries to limit the vaccine’s use to older people, and a few to drop...

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Three kids get life-saving Rs 16-crore injections for free at Bengaluru hospital

BENGALURU: Three girls suffering from the rare disease, Spinal Muscular Atrophy, were administered the expensive gene therapy, Zolgensma, for free at Bangalore Baptist Hospital on Thursday. Each vial of the one-time...

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Cystic Fibrosis Day

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Software engineer bets on technology to help speed rare disease treatments

Click link to visit website https://www.sciencemag.org/news/2021/03/software-engineer-bets-technology-help-speed-rare-disease-treatments Sanath Ramesh’s life took an unexpected turn 2.5 years ago when his son, Raghav Ramesh, was born unable to move his hands and legs....

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Researchers find a new treatment for rare muscular disease

The disease causes muscle weakness and trouble breathing and can affect the heart and muscles. University of Cincinnati researchers have found a newer, more effective treatment for the disease Pompe that...

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International Pompe Day

With NO support from the government, a faulty gene puts families with #Rarediseases in India, in a never-ending odyssey! Meet the Pompe Warriors, 2 Different Lives, and their unique stories....

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On International Pompe Day, Pompe Foundation presents a captivating session on ‘Pompe: A rare disease”.

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Genetic testing: Everything you need to know

The results of genetic tests are not always straightforward, which often makes them challenging to interpret and explain. Therefore, it is important for patients and their families to ask questions...

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ORDI Media Statement on RD Policy in Indian Chronicle

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