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
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The following excerpt is from an Economic Times news story dated June 24, 2024, discussing the policy hurdles affecting the unavailability of orphan drugs in India, featuring Prof. Ramaiah Muthyala, CEO & President of IORD. India manufactures most of the key active pharmaceutical ingredients (APIs) for over 400 FDA-approved orphan drugs meant to treat rareRead more
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
The Indian Organisation for Rare Diseases is an institutional partner of ICORD. Buenos Aires: The 16th ICORD Annual Meeting, themed “Incentivizing Science and a Comprehensive Program for Rare Diseases,” is set to convene at the esteemed “Aula Magna” in the Faculty of Pharmacy and Biochemistry at the University of Buenos Aires (UBA), located at JunínRead more
Indian Organization for Rare Diseases (IORD) is a full member of Rare Disease International (RDI) Geneva: In a notable achievement for the global rare disease fraternity, Rare Diseases International (RDI) has been granted “official relations” status by the World Health Organization (WHO) during the 155th session of the WHO Executive Board in Geneva, held onRead more
By 2025, Indian pharmaceutical industry in the nation is predicted to reach $100 billion. Boston, USA: Even though India produces all 450 of the world’s orphan medications (APIs), the majority of these medications are not readily available and are not reasonably priced there, said Indian Organization for Rare Diseases (IORD) CEO & President Prof RamaiahRead more
The following is an excerpt from a news story on IORD’s World Rare Disease Day-2024 event published in Telangana Today newspaper. Khammam: Everyone, regardless of their health condition deserves access to quality healthcare and support, especially those suffering from rare diseases, stated Indian Organisation for Rare Diseases (IORD) president Prof. Ramaiah Muthyala. He addressed a gatheringRead more
The following is an excerpt from an address on Alternate Therapies for Rare Diseases delivered by Prof Ramaiah Muthyala, President & CEO, Indian Organization for Rare Diseases at the National Homeopathic Scientific Seminar-2024 in Hyderabad. Background: It was in 2016 when the topic of alternative therapies for rare diseases was first introduced at theRead more
It is with pride that the Indian Organization for Rare Diseases (IORD) observes this welcome development. The entry of Indian pharmaceutical companies into the manufacturing of rare drugs is the result of years of sustained advocacy by IORD and others.
(This article is written by Prof Ramaiah Muthyala, IORD CEO & President and first appeared in the portal Pharmaclick.co.in in its blog section. The original article can be accessed here) Recent fundraising efforts by some desperate parents of Pompe disease (Glycogen storage disease type II) to buy expensive medicines and prominent associations raising funds viaRead more