Hyderabad: As much as 90 per cent of patients affected with rare diseases are from middle class, said Eatala Rajender, the Health Minister of Telangana, at the one-day conference on rare diseases here on Friday. The minister also said that the government had formulated a policy for ‘rare diseases’ and that there was a needRead more
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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. Those suffering from such ailments hit by lack of info. How many cases of rare diseases does India have? No one knows. ThisRead more
Hyderabad: Members of the Indian Organization of Rare Diseases (IORD), an umbrella organisation representing patients and patient groups of rare diseases have sent a proposal to the Centre that a questionnaire should be included in the upcoming census to identify patients. “We have urged the government to identify the patients and once the actual numberRead more
Citing space constraints in Census questionnaires and increase in workload of already-overworked enumerators with data related works, the Registrar General of India has turned down the proposal of the Indian Organisation for Rare Diseases (IORD), to incorporate patient data collection in the Census 2021 programme. “By just placing a column on rare disease in theRead more