![A Rare Case of Extreme Apathy A Rare Case of Extreme Apathy](https://magarticles.magzter.com/articles/241/413857/5e462acde9820/A-Rare-Case-of-Extreme-Apathy.jpg)
FOR the past year, several groups of parents whose children suffer from debilitating rare genetic diseases have been waiting for the government to spell out a blueprint for their treatment. Moumita Ghosh, an optometrist in Calcutta, is one of them. In July 2018, she had put in an application to West Bengal’s health department to support treatment for her daughter Debosmita, aged nine, suffering from spinal muscular atrophy (SMA). “Every week since I have visited the health department hoping something will happen,” she tells Outlook. All that anticipation, she fears, may amount to nothing as the draft National Policy for Rare Diseases (NPRD) 2020, which was put out for public comments last month, doesn’t specifically talk about an outlay. “We had hoped the new policy will provide some kind of funding for the treatment of patients,” she says.
Rare diseases present a complex problem, starting with the diagnosis that takes years in many cases and then the treatment—many disorders have no treatment yet, but where they are available, the medicines are among the most expensive in the world. About 70 million Indians are likely to be suffering from rare genetic diseases going by estimates of global incidence rates, but actual data pertaining to India isn’t available. This includes a large collection of disorders—about 450 diseases considered rare globally have been recorded in India, many of them extremely rare and others less so.
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Denne historien er fra February 24, 2020-utgaven av Outlook.
Start din 7-dagers gratis prÞveperiode pÄ Magzter GOLD for Ä fÄ tilgang til tusenvis av utvalgte premiumhistorier og 9000+ magasiner og aviser.
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![Layers Of Lear Layers Of Lear](https://reseuro.magzter.com/100x125/articles/241/1927469/GG1vuyCV91734076349724/LAYERS-OF-LEAR.jpg)
Layers Of Lear
Director Rajat Kapoor and actor Vinay Pathak's ode to Shakespeare is an experience to behold
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Loss and Longing
Memories can be painful, but they also make life more meaningful
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Suprabhatham Sub Judice
M.S. Subbulakshmi decided the fate of her memorials a long time ago
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Fortress of Desire
A performance titled 'A Streetcart Named Desire', featuring Indian and international artists and performers, explored different desires through an unusual act on a full moon night at the Gwalior Fort
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Of Hope and Hopelessness
The body appears as light in Payal Kapadia's film
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Ruptured Lives
A visit to Bangladesh in 2010 shaped the author's novel, a sensitively sketched tale of migrants' struggles
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The Big Book
The Big Book of Odia Literature is a groundbreaking work that provides readers with a comprehensive introduction to the rich and varied literary traditions of Odisha
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How to Refuse the Generous Thief
The poet uses all the available arsenal in English to write the most anti-colonial poetry
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The Freedom Compartment
#traindiaries is a photo journal shot in the ladies coaches of Mumbai locals. It explores how women engage and familiarise themselves with spaces by building relationships with complete strangers
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Love, Up in the Clouds
Manikbabur Megh is an unusual love story about a man falling for a cloud. Amborish Roychoudhury discusses the process of Manikbabu's creation with actor Chandan Sen and director Abhinandan Banerjee