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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

This is a transcribed speech of Sri M.T. Krishna Babu, IAS, Special Chief Secretary, Health Medical & Family Welfare, Govt. of Andhra Pradesh highlighting need for Strengthening Rare Disease Care in Andhra Pradesh. He delivered this speech at the World Rare Disease Day 2025 conference, organized by the Indian Organisation for Rare Diseases in Vijayawada,Read 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