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..

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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? 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..

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..

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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...

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https://timesofindia.indiatimes.com/india/why-parents-of-children-with-rare-genetic-diseases-have-turned-activists/articleshow/104826371.cms..

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Mrs. Bhoopathy is a volunteer at Baptist Hospital and keep interacting with Mrs Chetana from  ORDI who is visits Baptist Hospital to Support ORDI Nerve & Muscle Clinic. She keeps supporting us and witnessed ORDI support to Rare Disease patient...

Three new mutations in the GAA gene were linked with heart disease and severe breathing problems in infants with infantile-onset Pompe disease (IOPD) in Malaysia, a study reports. “The novel mutations identified in this study expands the mutation spectrum for IOPD,” the researchers wrote...

Alexion, AstraZeneca Rare Disease, has completed a definitive purchase and license agreement for a portfolio of preclinical rare disease gene therapy programs and enabling technologies from Pfizer Inc. (Pfizer). These new resources build on the combined capabilities of Alexion and..

June 28 is International Newborn Screening Day. The purpose of newborn screening is to identify conditions which can be treated, especially if caught early, so that affected children can live healthier lives. However, the challenge remains that unfortunately several countries,..