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Racefor7: Over 4000 participants virtually unite to raise awareness for rare diseases

Click Below Link: Racefor7: Over 4000 participants virtually unite to raise awareness for rare diseases In the backdrop of 70 million rare disease patients in India, Organization for Rare Diseases...

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Two-year-old Daksha and the uphill task of battling rare diseases

A housewife from Kannur, she had travelled even during the peak Covid days to AIMS Kochi to ensure that her child’s treatment was not affected. KOCHI: Dheeshma Sujesh is willing to...

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A Panel discussion highlights issue rare disease patients face

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PODCAST EPISODE The Lead: A cause to help children affected by rare diseases DH Radio

Episode Description In this episode of the Lead, Prasanna Shirol from the Lysosomal Storage Disorder Support Society India talks about helping those affected by rare diseases. Ahmed Shariff: Hi and...

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Delhi HC asks Centre to help fund treatment of minor suffering from rare disease

Justice Najmi Waziri, on March 4, took note of the submission by the child’s mother who had contended that there is some hope for treatment of her child in the...

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Opinion: India Needs Policy To Ensure Funding, Patient-Friendly Diagnosis To Curb ‘Rare Diseases’

Opinion: India Needs Policy To Ensure Funding, Patient-Friendly Diagnosis To Curb ‘Rare Diseases’ Rare diseases are called so because they occur in only a small portion of a country’s population....

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AIIMS Bhopal organises events on Rare Disease Day

The Department of Pediatrics, AIIMS Bhopal organised several events on the occasion of “Rare Disease Day” on Friday. The purpose of these events was to raise awareness for children suffering...

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Delhi High Court Seeks Union’s Health Budget Details, Crowdfunding Proposals On Petition For Treatment of Rare Diseases

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ORDI urges Union govt to increase RAN grant to make treatment of rare diseases affordable

click below Link: http://www.pharmabiz.com/NewsDetails.aspx?aid=135938&sid=1 Nandita Vijay, Bengaluru Saturday, March 6, 2021, 08:00 Hrs  [IST] The Organisation of Rare Diseases of India (ORDI) has urged the Union government to increase the Rastriya...

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Watch how Mr. Shirol used his experience and knowledge in establishing rare disease centres in hospitals across India.

Prasanna Shirol whose daughter suffers from a rare disease called Pompe, used his experience and knowledge in establishing rare disease centres in hospitals across India. Click below link:...

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