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..

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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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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..

Boehringer Ingelheim Our team from the India, Middle East, Turkey, and Africa region recently organized a rare disease summit, bringing together healthcare professionals, patient organization representatives, and policy makers. Our objective was to redefine the significance of rare diseases 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,..

I am fortunate to be part of the “The Wellbeing Project” (Cohort 5). This is an effort to Catalyze a culture of Inner Wellbeing for all Change Makers. This is a journey to find a deeper sense of personal wellbeing...

Rare Disease (RD) is defined by the World Health Organisation (WHO) as an often debilitating, lifelong disease or disorder with a prevalence of 1 or less per 1,000 population. However, there is no universal definition as different countries define rare..

Ahead of the Assembly elections scheduled for May 10, 2023, the Organisation of Rare Diseases of India (ORDI) has called upon the political parties in Karnataka to include support for rare diseases in their election manifesto. The state accounts for..

Globally as well as in India, rare or orphan diseases as they are also known, pose a significant threat not just to the public health system but also to the country’s economic burden. Not to mention the catastrophic impact on..

New Delhi: The government has exempted all food and drugs imported for the treatment of all rare diseases from basic customs duty, a move that could potentially benefit 70-90 million people and which has been hailed by people working in..

The Union Budget presented by Finance Minister Nirmala Nirmala Sitharaman on February 1 included a declaration to launch a project to eliminate sickle cell anaemia from the country by 2047. “A mission to eliminate sickle cell anaemia by 2047 will..