ORDI News

South Region Virtual Rare Disease Consultation on 18th February 2021 – Joining Link

Hello All, State government of Karnataka is organising a South Region Virtual Rare Disease Consultation in collaboration with PPHF. The objective of the virtual consultation is to address the key unmet...

Watch NewX 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.

https://youtu.be/KnZiSIhQGlE ...

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...

₹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...

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”...

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...

Article published in “Indian Express” on 10th 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” being organised on “World Rare Disease Day” on 28th February 2021 at 6.30 am....

Need of rare disease policy

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Former India goalkeeper Prasanta Dora dies of Rare Disease

Former India goalkeeper Prasanta Dora, who made a name for himself while playing for big three clubs of Kolkata Maidan, died on Tuesday. He was 44 and is survived by...

South Region Virtual Rare Disease Consultation on 18th February 2021 – Joining Link

Watch NewX 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.

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.

The Burden of Rare Diseases

₹16 crore drug is the hope for SMA patients

Spreading Global awareness on rare disease through Race for 7

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

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

Need of rare disease policy

Former India goalkeeper Prasanta Dora dies of Rare Disease

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