The following article is reproduced from a news article by Amrita Didyala, published in Times of India on Wednesday, December 18, 2024, based on the webinar ‘The Global Burden of Rare Diseases: Issues and Challenges’ addressed by Prof. Ramaiah Muthyala at the Federation of Asian Biotech Associations (FABA)-US Chapter. Hyderabad: Speaking at a webinar onRead more
Blog
The following excerpt is from a Times of India news story dated June 23, 2024, discussing the unavailability of orphan drugs in India, featuring Prof. Ramaiah Muthyala, CEO & President of IORD. HYDERABAD: Though India manufactures most of the key active pharmaceutical ingredients (APIs) for over 400 FDA-approved orphan drugs for rare diseases, patients backRead 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: 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