In May 2025, rare disease research advanced significantly with breakthroughs in AI diagnostics, CRISPR therapies, and rapid genetic testing. IORD presents a curated round-up of the month’s most impactful developments. From innovative tools at AIIMS to global success stories in treatment and awareness, these developments mark a turning point in how rare genetic conditions areRead more
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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
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
This extract is from a poster presented by Indian Organisation for Rare Diseases (IORD) President and CEO, Prof. Ramaiah Muthyala, titled: “Role of Patient Support Organizations and Collaborative Genomics Programs in Enabling Participatory Medicine for Rare Diseases in India: A Case Study of Autosomal Recessive Congenital Ichthyosis” at the Undiagnosed Disease Network Conference, South KoreaRead more
Manufacturing Drugs for Selected Rare Diseases: Dr Vinod K Paul This is a transcribed speech of Dr. Vinod K. Paul, Member of the National Institution for Transforming India (NITI) Aayog, on “Manufacturing Drugs for Selected Rare Diseases.” He delivered this speech at the World Rare Disease Day 2025 conference, organized by the Indian Organisation forRead 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 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.
Prof. Ramaiah Muthyala delivering a talk on rare diseases in India, in Visakhapatnam on Monday. — PHOTO: C.V. SUBRAHMANYAM This is the era of genetics and not IT anymore, asserted a professor from University of Minnesota of the US who is working in the direction of forming support groups to find drugs for rare diseasesRead more