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Research center for rare diseases opens in Bengaluru

Comprehensive genetic counselling will be undertaken for around 2,500 families with rare disorders The Karnataka government has launched a research and training unit for rare diseases. The unit will strengthen...

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Need for urgency in treatment for rare diseases

Time is considered to be one of the most precious elements for humans. In the case of people suffering from rare diseases, the criticality of time cannot be overemphasised because...

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Hyderabad: 8 year old with rare disorder treated

HYDERABAD: An eight-year-old child with a rare genetic disorder ‘Alagille Syndrome’ was successfully treated with a liver transplant in a city-based hospital. The child was only 12kg and 105cm. His...

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Parents Become Drug Developers to Save Their Children’s Lives

Maggie Carmichael wasn’t developing like other kids. As a toddler, she wasn’t walking and had a limited vocabulary for her age. She was diagnosed with PMM2-CDG, potentially fatal gene mutations...

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ORDI News letter July 2022

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Initiatives by the Government for treatment of rare diseases

Eight Centres of Excellence (CoEs) have been identified for diagnosis, prevention and treatment under National Policy for Rare Diseases 2021 Provision for financial support of up to Rs. 50 lakhs...

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Woman with rare blood disorder treated at Odisha hospital

The woman, whom the disease might not have given a few months to live, was discharged from the hospital on July 23 in good condition and full blood count recovery...

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Karnataka aiming to bring down infant mortality rate to single digits: CM Bommai

According to data from the Union Ministry of Health and Family Welfare, the IMR was 21 per 1,000 live births in Karnataka in 2019, whereas the all-India average was 30....

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Drugs for SMA given to 14 children

The Health department has distributed drugs for Spinal Muscular Atrophy (SMA) free of cost to 14 children with the rare disease, Health Minister, Veena George, has said in a statement....

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MOUwith TIGS

Organization for Rare Diseases India (ORDI) and Tata Institute for Genetics and Society (TIGS) have exchanged the MOU. TIGS Director Dr.Rakesh Sharma and ORDI’s CO-founder & Executive Directr Mr.Prasanna Shirol,...

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