Activities - Prasanna Shirol, Rare Disease Advocate

MOHFW and WHO conducted the 2 days National Symposium On Rare Diseases in Udaipur

- February 29, 2024

I was a Invitee and a Speaker at the 2 days National Symposium On Rare Diseases in Udaipur jointly conducted by MOHFW ( ministry of Health and Family Welfare and WHO – India office. This was the first meeting by..

Visit to Pompe Patients house in Bijapur

- January 30, 2024

My self and Sharada today visited to check on how Madiha a cute girl diagnosed with Pompe in Bijapur is doing. We were happy to see her activities and smile on their parents on improving health condition. Thanks to early..

Inaugurated Cystic Fibrosis Clinic at Manipal Hospital Bengaluru

- January 27, 2024

This special clinic benefits all Cystic Fibrosis Patients. Here special rate are applicable and gets advantage of the specialist Dr Ilin and eliminates the lack of specialist availability in the country even to the lower middle class and rural patients...

Time with a family whoose twins dignosed with CCHS – Congenital central hypoventilation syndrome (CCHS)

- January 14, 2024

Today, I spent time with the family of Mr. Ameet and Mrs. Vijaylakshmi, whose twins have been in the ICU for three months since birth. Their newborn twins have been diagnosed with CCHS (Congenital Central Hypoventilation Syndrome), a rare genetic..

Speaker at the 1st International Patient Summit

- December 23, 2023

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Speaker at the 1st International Patient summit- New Delhi

- December 12, 2023

It was my privilege to speak at the 1st International Patient summit on challenges and successes of hashtag#ORDI journey. opportunity to interact with many Patients, patient leaders, Advocates from South Asia, Healthcare Experts, Industry leaders etc Thank you Dr. Ratna Devi and Patient Academy for..

Creating Awareness on Universal Health Coverage

- December 11, 2023

#UHC..

Expert Panelists” at Consultative Workshop on “Health Technology Assessment” (HTA) conducted by “Department of Health Research”, “Ministry of Health and Family Welfare” in India on 7th Dec 2023 at Habitat Centre, New Delhi. .

- December 7, 2023

I was one of the “Expert Panelists” at Consultative Workshop on “Health Technology Assessment” (HTA) conducted by “Department of Health Research”, “Ministry of Health and Family Welfare” in India on 7th Dec 2023 at Habitat Centre, New Delhi. . The objective was to discuss the current scenarios, identify..

India’s first Pompe disease patient passes away: What is this rare genetic disorder?

- December 7, 2023

India’s first Pompe disease patient passes away: What is this rare genetic disorder? Its prevalence estimates range from 1 in 40,000 to 1 in 300,000 births. How is it diagnosed and in what ways does it affect an individual? Written..

Consultative Workshop on “Health Technology Assessment” (HTA)

- December 7, 2023

Photographs of the Consultative Workshop on “Health Technology Assessment” (HTA) conducted by “Department of Health Research”, “Ministry of Health and Family Welfare” in India on 7th Dec 2023 at Habitat Centre, New Delhi. . The objective was to discuss the..

Every Breathe Counts

- November 25, 2023

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At The 2nd Rare Genetic Diseases Research Summit – REDRESS-2023

- November 23, 2023

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Maranadalli Mahanavami

- November 9, 2023

A program was arranged on 9th Nov 2023 in Dharwad on account of My daughters Nidhi’s Death. We actually celebrated her death. She lived and inspired millions in India and became a reason for change in India for Rare Diseases...