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Top News In ஆர்கநைஸேஶந் ஆஃப் ரேர் நோய்கள் இந்தியா Today - Breaking & Trending Today

What do you do when your child's life is dependent on a Rs 16 crore drug?

What do you do when your child’s life is dependent on a Rs 16 crore drug?
© Provided by The Times of India
Ayaansh was about eight months old when his family realised something was wrong he could not crawl or sit up, struggled to have milk or food, and had no neck control. The paediatrician would say that it could be a milestone delay. “But, when he did not achieve any milestone at nine months, we visited a neurologist and were shocked to hear that he had Spinal Muscular Atrophy (SMA),” says Yogesh Gupta, Ayaansh’s father.
This was in June 2019. Two years on, the family’s hopes are pinned on a wonder drug - Zolgensma. However, the medicine costs $2.125m (around Rs 16 crore) are prohibitive. So far, the family has been able to raise Rs 1.4 crore and are requesting NGOs, philanthropists and the government to help. ....

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What price a child's life? India's quest to make rare disease drugs affordable

India launched a registry of rare disease patients in 2017 but it is far from complete. Unlike the US, which has economic incentives for pharmaceutical companies under the Orphan Drug Act (to encourage development of drugs for diseases too rare to be worth pursuing otherwise), the Indian government does not offer such provision.
Owing to countless generations of consanguineous and endogamous marriages – within extended families or within the same caste –that raise populations’ vulnerability to genetic disorders, the prevalence of rare diseases may be higher in some Indian ethnic groups. Newborn screening could diagnose many disorders at birth, since 80% of rare diseases are genetic. But barring a few Indian states, it is unavailable in government-run hospitals, where, in 2018, almost 55% of women gave birth. ....

Prasanna Shirol , Arkasubhra Ghosh , Dhara Mamania , Sanofi Genzyme , Organisation Of Rare Diseases India , Research Laboratory , Takeda Pharmaceutical Company , Rare Diseases India , Orphan Drug Act , Parent Project Muscular , பிரசன்னா ஷிரோல் , தாரா மாமணிய , ஆர்கநைஸேஶந் ஆஃப் ரேர் நோய்கள் இந்தியா , ஆராய்ச்சி ஆய்வகம் , டாகேடா மருந்து நிறுவனம் , ரேர் நோய்கள் இந்தியா , ஆர்ஃபந் மருந்து நாடகம் , பெற்றோர் ப்ராஜெக்ட் தசை ,

DNA Explainer: All about world's most expensive drug Zolgensma which costs Rs 18 crore a dose

DNA Explainer: All about world s most expensive drug Zolgensma which costs Rs 18 crore a dose
The virus used in Zolgensma gene therapy works as soon as it is introduced to a patient, their body starts to produce antibodies.
(Image Source: Twitter)
Updated: Mar 10, 2021, 05:11 PM IST
Do you know which is the most expensive drug in the world and it is used to cure which disease? The drug s name is Zolgensma, manufactured by Swiss multinational pharmaceutical company Novartis.
The life-changing drug Zolgensma , considered the world s most expensive drug and approved by the United Kingdom s National Health Service (NHS) to cure a rare genetic disorder has gone viral. ....

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First US, now UK approves world's costliest drug priced at Rs 18 crores: Read all about Zolgensma by Novartis

First US, now UK approves world's costliest drug priced at Rs 18 crores: Read all about Zolgensma by Novartis
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Patient advocacy groups seek more funds for treatment of rare diseases

Patient advocacy groups seek more funds for treatment of rare diseases
Updated:
Updated:
‘Focus on research will help to cut the cost for healthcare systems’
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‘Focus on research will help to cut the cost for healthcare systems’
On Rare Diseases Day which fell on Sunday, stakeholders demanded more funds for treatment of patients afflicted with known rare diseases, besides more research.
According to the Indian Society for Clinical Research, there are 7,000 known rare diseases that have affected 300 million people across the globe. Of them, 70 million are in India, and most have no or very limited treatment options.
Society president Chirag Trivedi said one in 20 persons would live with a rare disease at some point in life. A large number of patients had no access to appropriate diagnosis or treatment. “This should be a wake-up call for clinical researchers,” he said. Focus on research could reduce the cost for healthcare ....

Tamil Nadu , Prasanna Shirol , Manjit Singh , Chirag Trivedi , Indian Society For Clinical Research , Organisation Of Rare Diseases India , Health Department , Ministry Of Health , Madras High Court , Health Ministry , International Gaucher Alliance , Rare Diseases Day , Indian Society , Clinical Research , Family Welfare , Rare Diseases India , Rare Diseases , Rare Disease Cell , Union Health Ministry , தமிழ் நாடு , பிரசன்னா ஷிரோல் , மன்ஜித் சிங் , சிராக் திரிவேதி , இந்தியன் சமூகம் க்கு மருத்துவ ஆராய்ச்சி , ஆர்கநைஸேஶந் ஆஃப் ரேர் நோய்கள் இந்தியா , ஆரோக்கியம் துறை ,