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Source: Vaartha https://www.vaartha.com/telangana/ts-minister-etala-rajender-attends-world-rare-disease-day-event/Read more

Hyderabad: While there are 7,000 recorded rare diseases, it is an uphill task to identify a patient with a rare disease. As per the Indian Organization of Rare Diseases (IORD), it takes an average of 4.8 years for a rare disease patient to be diagnosed, while the maximum time taken could be 20 years asRead more

Hyderabad: The draft of the National Policy for Rare Diseases introduced by the Union government on January 13, this year, was much debated in medical circles due to the suggestion of using crowdfunding as a method of addressing funding issues. Even as the world observes World Rare Disease Day, several patient groups and experts sayRead more

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

Telangana State Health Minister Eatela Rajender Attends World Rare Disease Day 2020 in Hyderabad Source: Eenadu https://www.eenadu.net/latestnews/Etela-Speech-at-public-gardens-hyderabad/1600/120028427Read more

You are not alone as we all are one! Doctors, Survivors, Expert Speakers, Healthcare Staff, Patients’ Organizations, Rare Disease Patients, Researchers, Policy Makers, Rare Disease Volunteers, Parents and Students enthusiastically participated in IORD’s conference on “Raising The Awareness: Prevention of Rare Diseases” in Hyderabad on 28 February 2020. That’s the takeaway from Indian Organization forRead more

World Rare Disease Day was observed on Friday, here at Hyderabad Millions of people around the world observe Rare Disease Day on the last day of February. “Some rare diseases, such as cystic fibrosis, thalassemia, hemophilia, and Lou Gehrig’s disease ( ALS ), are well known to the public. India has already taken steps toRead more

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

Hyderabad: While the Centre has made attempts to address the problem of rare diseases and even finalised a draft policy for rare diseases, experts say that the draft has completely missed out on covering the aspect of patient knowledge. In such cases, it is often the patient who may have more knowledge about the conditionRead more