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ORDI News Letter August 2023

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New GAA mutations linked to infantile-onset disease

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...

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Gene therapy: Human trials to begin in Karnataka for treatment of genetic disorders

Gene therapy work was started 10 years ago under the guidance of founder and former chairman Dr K Bhujang Shetty. BENGALURU: Gene therapy human trials will be initiated in India for...

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ORDI Newsletter June 2023

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The gift of early detection: All you need to know about newborn screening

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...

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ORDI Newsletter May 2023

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“The Wellbeing Project” (Cohort 5)

Our Co founder Mr Prasanna Shirol , is a part of the “The Wellbeing Project” (Cohort 5). This is an effort to Catalyze a culture of Inner Wellbeing for all...

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ORDI News letter Apr 2023

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Rare Disease Policy: Need of the hour

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,...

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ORDI calls on Karnataka political parties to include rare disease support in the election manifesto

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...

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