IORD proposes a Section 8, CSR-supported public-interest pharmaceutical model to ensure affordable access to orphan drugs for millions of Indian patients.
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(This article is written by Dr. Krishnaji Rao, IORD Secretary, and first appeared in Pharmaclick magazine on pages 67, 68, and 69. The original article can be accessed here) The Indian Organisation for Rare Diseases (IORD) is a pivotal force championing rare disease—conditions that, while individually uncommon, collectively affect millions. Founded in 2005, IORD representsRead more
This is a translated excerpt from Prime9 News panel discussion on rare diseases, featuring experts Dr. Amaresh Rao, Dr. Krishnaji Rao Muthyala, and Professor Ramaiah Muthyala. The discussion explored the challenges of diagnosing rare conditions, gaps in awareness, and the urgent need for policy action to address these life-threatening illnesses, which remain largely undiagnosed despiteRead more
Kakatiya Medical College (KMC), Warangal, made a proud mark at the Annual UG Medical Research Conference held on May 5, 2025, at the prestigious Armed Forces Medical College (AFMC) -Illuminati Conference – in Pune. A seven-member team of final-year MBBS students presented their in-depth research titled “Dual Perspectives on Rare Diseases: An Analysis of DiagnosticRead more
Prof. Ramaiah Muthyala discussed challenges and solutions for rare disease access at the 2025 World Orphan Drug Congress in Boston. He highlighted the global economic burden of rare diseases and the unique barriers in low- and middle-income countries. Efforts in India to reduce orphan drug costs, including the availability of Hydroxyurea for sickle cell diseaseRead more
This is a transcribed speech of Indian Organisation for Rare Diseases (IORD) President and CEO, Prof. Ramaiah Muthyala delivered at the World Rare Disease Day 2025 conference in Vijayawada, organized by the IORD. Check the full video here. Today, while India celebrates National Science Day, the world celebrates Rare Diseases Day. Both are important,Read more
The following is reproduced from an editorial article by Kamal Pratap Singh published in Biotech Express on page 8 in November 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. In a ground-breaking webinar hostedRead more
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
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
(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