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
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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