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 Prasanna is one of the key pioneers in the field..
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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” being organized on “World Rare Disease Day” on 28th February 2021 at 6.30 am. https://registration.racefor7.com/..
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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 BENGALURU: Prasanna Shirol is a man on a mission. Come Feb...
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Published dtd 10.02.2021..
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Invitation for the East Region Virtual Rare Disease Consultation on 12th December 2020 from 10:00 am to 2:00 pm..
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Click below link for more information 2020-PediatricBioethicsBrochure-v3 ..
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On this episode, Pallavi chats with Prasanna Shirol about his daughter, Nidhi’s extremely rare disease, Pompe. Here’s an unbelievable story of the unimaginable. Click the link below for the audio mailer https://youtu.be/vqwZUVCNF_8 http://shows.wyn.studio/rF_jI_MI..
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An article from ” @ The Hindu” today, 17th July 2020 on the scarcity/ unavailability of drugs for #RareDisease patients who are facing loss of #accesstomedicines due to #COVID; supply interruption of #importeddrugs is a threat to their life and..
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Click below link for audio. https://podtail.com/podcast/the-fertility-motherhood-and-wellness-show-true-st/role-of-prenatal-diagnosis-in-pregnancy/..
Read MoreOrganization for Rare Diseases India (ORDI) has highlighted the importance of creating awareness on Mucopolysaccharidosis (MPS), which is a category of a rare disease. MPS is a part of a group of liposomal storage disorder, which is caused..
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The last page of the Karnataka Hemophelia socity calender Today participated in the Board Meeting of Karnataka Hemophilia Society – Davangere under the leadership of Dr Suresh Hanagawadi. They also passed a resolution to offer me as a ” Advisory Council Member”..
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We Also Inaugurated – Pitrua Astha to support families of Special Childrens. I am a cofounder of an organization. On this occasion, Many VIP and Celebrities blessed us : 1) Mr Srinath – Film Actor Kannada 2) Mr Puneeth Rajkumar – Film..
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Rare disease-right to hope..
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This article from the Hindustan Times comes in mid of desperation from Rare Disease patients and families and as a hope for 2020. The tension is that, the silence for the of Ministry of Health on the announcement of the..
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