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Three children with Gaucher's disease set to receive treatment from next week

Three children with Gaucher's disease set to receive treatment from next week
thehindu.com - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from thehindu.com Daily Mail and Mail on Sunday newspapers.

Tamil Nadu , Prasanna Shirol , Rafiq Mohammed , Supreme Court , Ministry Of Corporate Affairs , Organisation For Rare Diseases India , Health Department , Lysosomal Storage Disorders Support Society , Madras High Court , Chief Minister , Rare Diseases , Corporate Affairs , Companies Act , தமிழ் நாடு , பிரசன்னா ஷிரோல் , ர்யாஃபீக் முகமது , உச்ச நீதிமன்றம் , அமைச்சகம் ஆஃப் பெருநிறுவன வாழ்க்கைத்தொழில்கள் , ஆர்கநைஸேஶந் க்கு ரேர் நோய்கள் இந்தியா , ஆரோக்கியம் துறை , மெட்ராஸ் உயர் நீதிமன்றம் , தலைமை அமைச்சர் , ரேர் நோய்கள் , பெருநிறுவன வாழ்க்கைத்தொழில்கள் , நிறுவனங்கள் நாடகம் ,

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

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

Prasanna Shirol , Ranjani Madhavan , Ann Agnes Mathew , Compassionate Access Programme , News Service , Organization For Rare Diseases India , Spinal Muscular Atrophy , Bangalore Baptist Hospital , Muscular Atrophy , Bengaluru Based Organization , Rare Diseases , பிரசன்னா ஷிரோல் , ரஞ்சனி மாதவன் , இரக்கமுள்ள நுழைவு ப்ரோக்ராம் , செய்தி சேவை , ஆர்கநைஸேஶந் க்கு ரேர் நோய்கள் இந்தியா , முதுகெலும்பு தசை அட்ரோஃபீ , பெங்களூர் ஞானஸ்நானம் மருத்துவமனை , தசை அட்ரோஃபீ , ரேர் நோய்கள் ,

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.

Rashtriya Arogya Nidhi , Prasanna Shirol , Rare Diseases Group , News Service , Organization For Rare Diseases India , National Policy For Rare Diseases , High Court , Express News , National Policy , Rare Diseases , Bengaluru Based Organization , Rare Diseases India , Lysosomal Storage Disease , Founder Director , ரஷ்ற்ரிய ஆரோக்கிய நிதி , பிரசன்னா ஷிரோல் , செய்தி சேவை , ஆர்கநைஸேஶந் க்கு ரேர் நோய்கள் இந்தியா , தேசிய பாலிஸீ க்கு ரேர் நோய்கள் , உயர் நீதிமன்றம் , எக்ஸ்பிரஸ் செய்தி , தேசிய பாலிஸீ , ரேர் நோய்கள் , ரேர் நோய்கள் இந்தியா , நிறுவனர் இயக்குனர் ,

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 ,