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 number is known (current estimation is 5%-7% of the population), the actual extent of treatment required will be understood. For instance, a disease that is not considered a serious problem might actually turn out to be a major cause for concern once the number of patients is known. Then we need to design the policy accordingly,” said Syed Sanaullah, IORD management committee member.
“This survey can help in research and development of orphan drugs. Currently, drug manufacturing companies do not focus on these as they are not profit making,” said Dr Srinivas Namineni, Paediatrician who treats patients with rare diseases.
Source: Times of India
https://timesofindia.indiatimes.com/city/hyderabad/centre-urged-to-include-survey-on-rare-diseases-in-upcoming-census/articleshow/73894595.cms
