The IGICH will face a serious difficulty from August 2021, the High Court observed on June 18 this year. BENGALURU: In an ongoing case in the Karnataka High Court...
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...
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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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...
Disease Profile ORDI sees NPRD 2021 lacks focus on ailing patient affordability calls to rely on crowd funding Our Bureau, Bengaluru Wednesday, April 7, 2021, 12:30 Hrs [IST] Organization for Rare...
Rare disease policy a mockery of right to health, says Bengaluru advocacy group “The NPRD, 2021, is a mockery of the right to health each person in India enjoys. The...
As per Organization for Rare Diseases India (ORDI), the National Policy for Rare Diseases, 2021 abridges the ‘right to health’ by ignoring the true needs of rare disease community in...
