Hyderabad: Centre removes data on rare diseases prevalence rat
Deccan ChronicleHyderabad: How many cases of rare diseases does India have? This is because the new policy document of rare diseases of the Union health ministry has removed the earlier prevalence rate of 6 per cent of the population. The 2017 Rare Diseases Policy took the prevalence rate of countries in the West and tabulated that but they found that the numbers were very high. This has hit the patients who are suffering from rare diseases like thalassemia, sickle cell anaemia, lysosomal storage disorders, Hirschsprung’s disease, Gaucher’s disease, cystic fibrosis, haemangiomas and certain forms of muscular dystrophy. The efforts were based at creating an infrastructure where they can be treated rightly and on time.” The Indian Organisation for Rare Diseases carried out a survey in cities and found that 24 per cent of the people were not aware that there is a rare disease, 50 per cent of them who were aware were struggling for medicines and drugs as they are very costly or not available in India.
History of this topic
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