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No parent should repent a child born with a rare disease’: Prasanna Shirol, Co-Founder & Executive director, ORDI

Prasanna Shirol, Co-founder and Executive director of Organisation for Rare Disease in India (ORDI) recently joined NewsX for a conversation under its special segment, News X India A-List series. Mr...

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Watch the NewsX A-List Interview of Mr. Prasanna Shirol; the story of ORDI that begins from going Pillar to Post for his daughter’s undiagnosed Rare Condition until he chooses the path to Rare Advocacy.

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The Burden of Rare Diseases

Over 70 million Indians suffer from rare diseases, the treatment cost of which runs into tens of lakhs every year, lifelong. Yet we don’t have a national policy to support...

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₹16 crore drug is the hope for SMA patients

Nearly 200 in Karnataka are diagnosed with the rare genetic disease A gene therapy costing ₹16 crore is the only shot of life for nearly 200 children with Spinal Muscular...

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Gene variants increase risk of Addison’s disease: Study

Gene variants increase risk of Addison’s disease: Study Addison’s disease is a rare disease in which the immune system attacks the adrenal glands. According to the largest genetic study to date on...

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Amicus’s path to unseat Sanofi in rare disease gets steeper after Phase 3 miss

Amicus Therapeutics CEO John Crowley said the totality of data support the Pompe disease therapy’s submission to the FDA. That rolling application is on track for completion in the second...

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तीरा कामत : ‘आमचं बाळ तर गेलं पण बेबी तीरासारखी अनेक बाळं आहेत ज्यांना वेळेत मदत मिळत नाहीये’

काल अंकुर यांच्याशी बोलल्यानंतर आज सकाळी त्यांचा पुन्हा फोन आला, हे सांगायला की आरव वाचू शकला नाही. 12 फेब्रुवारीला सकाळी 7 च्या सुमारास त्याचा मृत्यू झाला. “आमचं बाळ तर गेलं....

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Spreading Global awareness on rare disease through Race for 7

Article published in “New Karnataka”  on 11th Feb 2021 about ORDI – Race for 7. This 6th edition and is Virtual this year Race for 7 is an annual mass “Awareness Run/Walk/Ride”...

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Article published in “Indian Express” on 10th Feb 2021 about ORDI – Race for 7. This 6th edition and is Virtual this year

Raring to go Run for a cause at this 7km race, where you can learn more about 7,000 rare diseases and the importance of diagnosing them early By Express News Service...

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Modi govt waives off Rs 6 crore tax for importing life-saving medicines for 5-month-old Teera

PM waived off the Rs 6 crore GST amount against Rs 16 crore worth imported medical drugs for Teera who has been suffering from a rare genetic disease. MUMBAI: Prime Minister...

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