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...
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....
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...
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...
“The NPRD, 2021, is a mockery of the right to health each person in India enjoys. The lack of foresight shines through the cold and thoughtless draft,” said Prasanna Shirol,...
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Click below link https://www.thehindu.com/opinion/editorial/a-good-start-the-hindu-editorial-on-government-support-for-continual-treatment-of-those-with-rare-diseases/article34239498.ece Fund support from government is vital for continual treatment of those with rare diseases It is binding on a welfare state to take care of every...
Pune, April 5, 2021: While the Central Government recently announced the National Policy for Rare Diseases, 2021, it has been observed that the policy has failed to define rare diseases...
Dr Harsh Vardhan, Union Health & Family Welfare Minister approved the “National Policy for Rare Diseases 2021” on 30th March 2021. For quite some time different stake holders have been demanding...
Beneficiaries for such financial assistance will not be limited to BPL families, but the benefit will be extended to about 40 per cent of the population who are eligible under...
