A webinar organized by the Federation of Asian Biotech Associations-US chapter highlighted the socio-economic and emotional impact on the 70 million Indians affected by rare diseases (RDs).
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Rare diseases, though affecting a small percentage of the population, represent a significant public health challenge in India. The Indian Organisation for Rare Diseases (IORD) has been at the forefront of advocating for policies, raising awareness, and improving treatment access. Rare diseases not only lead to the loss of human productivity but also place aRead more
Registration is Now Open for the Rare Diseases Nurses Network Webinar Hosted by the Indian Organisation for Rare Diseases (IORD). It will Highlight the Critical Role Nurses Play in Rare and Undiagnosed Diseases Worldwide. Rare and undiagnosed diseases (RUD) have gained global recognition as a significant health priority following the United Nations (UN) Resolution onRead more
The following excerpt is from a Times Now news story dated July 4, 2024, highlighting the challenges in addressing the unavailability of orphan drugs in India, despite the country’s successful development of COVID vaccines. It features insights from Prof. Ramaiah Muthyala, CEO & President of IORD. Dr Ramaiah Muthyala questions why despite being the pharmacyRead more
New York: In a momentous gathering at the 78th UN General Assembly Summit in New York on September 21, 2023, Mr Ramaiah Muthyala, President and CEO of IORD, took part in the prestigious formal Side-Event dedicated to the UN High-Level Meeting on Universal Health Coverage for Rare Diseases. The event, titled “Universal Health Coverage (UHC)Read more
The coordination among the 11 Centres of Excellence (CoE) for Rare Diseases and their communication with the Ministry of Health and Family Welfare’s technical committee appears to be significantly inadequate and slow, resulting in hassles for rare disease patients. In a heart-wrenching case, Kanna Rudraksh, a seven-month-old baby suffering from Pompe disease (a rare lysosomalRead more
In a significant development for the entire rare disease community and stakeholders in India, the Delhi High Court has ordered steps for implementing the National Rare Disease Policy, 2021 formulated by the Central Government. Justice Prathiba M Singh, on May 15, directed the formation of a five-member committee to oversee the implementation of the policyRead more
The following is an excerpt from an interview conducted by Pharma Intelligence with Prof Ramaiah Muthyala, President & CEO of Indian Organization for Rare Diseases (IORD), on central government’s exemption of customs duty on imported drugs and food items recommended for special medical purposes to treat rare diseases. You can read the complete story writtenRead more
The following is an excerpt from an interview of Dr Ramaiah Muthyala, President and CEO, Indian Organisation for Rare Diseases published by BioSpectrum in its April 2023 edition. It an English language Indian biotech magazine which focuses on topics in the field of pharma, agriculture, bioinformatics including news on corporates involved at the R&D orRead more
The government has waived basic customs duty on drugs and food items prescribed for special medical purposes that are imported for the treatment of rare diseases listed under National Policy for Rare Diseases, 2021.