The event, attended by leading ophthalmologists, ocular geneticists, pediatric specialists, researchers, and patient advocates, spotlighted the urgent need for early diagnosis, stronger referral pathways, and expanded genetic and multidisciplinary services to address the growing burden of rare ophthalmic disorders. Check the media coverage here and the event photographs here. Hyderabad: The Indian Organisation for Rare Diseases (IORD),Read more
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Registration is now open. Limited seats available — register now using this link. Hyderabad, February 2026: The Indian Organisation for Rare Diseases (IORD), in collaboration with L V Prasad Eye Institute (LVPEI) and Rainbow Children’s Hospital, will observe World Rare Disease Day 2026 with a focused scientific conference on Rare Diseases in Ophthalmology on 28 FebruaryRead more
IORD proposes a Section 8, CSR-supported public-interest pharmaceutical model to ensure affordable access to orphan drugs for millions of Indian patients.
(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
Khammam: Dr. Ramaiah Muthyala, President of the Indian Organization for Rare Diseases (IORD), addressed the Khammam Bar Association at an awareness program on “Rare Diseases – Role of Legal Professionals”, held at the District Bar Association Hall on Tuesday. He emphasized the critical role that legal professionals play in raising awareness about rare diseases andRead 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
Vijayawada: The Indian Organization for Rare Diseases (IORD), a non-profit advocacy body, convened a critical conference titled “RAISE THE AWARENESS – RARE DISEASES: Advocate Public Policy, Promote Diagnosis, Treatment & Social Services” at Fortune Murali Park, Vijayawada on February 28, to mark World Rare Disease Day 2025. The event, attended by healthcare experts, policymakers,Read more
A webinar titled on the “Urgent Need for a Unified Approach to Tackle Rare Diseases in India” is being organized jointly by RJS PBH – RJS Positive Media and the Indian Organisation for Rare Diseases (IORD) on February 9 at 11.00 AM. This event marks a significant step towards addressing the challenges posed by rareRead more
Registrations are now open for the 12th European Conference on Rare Diseases & Orphan Products (ECRD), scheduled to take place on May 15-16, 2024, at The Square venue in Brussels. Said to be one the largest patient-led events in the rare disease field, the hybrid conference would facilitate collaborative dialogue, learning, and conversation. It servesRead more