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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. ....

United States , United Arab Emirates , Parveen Nisha , Ashok Gupta , Yogesh Gupta , Prasanna Shirol , Rashtriya Arogya Nidhi , Mohammed Basil , Muhammed Asheel , Mohamad Rafiq , Organisation Of Rare Diseases India , Union Ministry Of Health Family Welfare , National Policy On Rare Diseases , Indian Council Of Medical Research , Rare Diseases Centre , Spinal Muscular Atrophy , Indian Council , Medical Research , National Policy , Rare Diseases , Union Ministry , Family Welfare , Lysosomal Storage , Rare Diseases India , Kerala Social Security Mission , Bangalore Baptist ,

Rare disease policy a mockery of right to health, says Bengaluru advocacy group

Rare disease policy a mockery of right to health, says Bengaluru advocacy group
newindianexpress.com - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from newindianexpress.com Daily Mail and Mail on Sunday newspapers.

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A good start: The Hindu Editorial on government support for continual treatment of those with rare diseases

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 single citizen. Securing the wellbeing of every one, particularly those unable to help themselves, irrespective of whether they constitute a critical mass or not, is important. The recent notification of the National Policy for Rare Diseases 2021 after various interventions, including the court, is pegged on this principle of inclusion. A good start, it offers financial support for one-time treatment of up to ₹20 lakh, introduces a crowdfunding mechanism, creates a registry of rare diseases, and provides for early detection. In its final form, however, the policy has left the rare diseases lobby sorely disappointed on a crucial note. Rare diseases are broadly defined as diseases that infrequently occur in a population, and three markers are used the total number of people with the disease, its prevalence, and the availability/non ....

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Know what diseases fall under Rare Diseases category

Know what diseases fall under Rare Diseases category
indiatvnews.com - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from indiatvnews.com Daily Mail and Mail on Sunday newspapers.

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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 ,