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...
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...
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...
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....
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....
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,...
Of all cases of rare diseases across the globe, around one-third occur in India. Yet, these diseases—‘rare’ because they affect a relatively small number of people—are hardly given attention in...
Since the diagnosis, on an average, the parents have been spending close to ₹50,000 every month and Palaash has now been advised to undergo surgery that will cost close to ₹20 lakh....
