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 2026 event in Hyderabad, focusing on rare ophthalmic disorders.
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India is emerging as a global leader in rare disease management, driven by IORD’s efforts since 2005 to advocate, raise awareness, and support millions affected by rare conditions, writes Dr Krishnaji Rao.
IORD urged inclusive global action on rare diseases at an Asia-Pacific webinar, emphasizing regional collaboration, policy implementation, and shared commitment to transform hope into tangible outcomes for patients.
Delhi High Court clears Natco to launch Risdiplam generic version Natsmart, making SMA treatment affordable for thousands.
IORD highlights gaps in rare disease care, with Prof. Ramaiah Muthyala noting progress under NPRD but stressing persistent challenges in diagnosis, treatment, and need for disease-specific strategies.
In a landmark ruling, the Delhi High Court ordered the creation of a ₹974 crore National Fund for Rare Diseases for 2024–26, emphasizing patient-centric policies, expanded treatment access, and funding reforms.
The Delhi High Court has introduced a landmark Standard Protocol to streamline rare disease management, ensuring continuous availability of therapies, local drug manufacturing, and time-bound treatment delivery.
Join an expert-led webinar exploring the complexities of rare diseases, featuring insights from IORD CEO & President Prof. Ramaiah Muthyala Rare diseases are a pressing global health issue, with an estimated 7,000 to 8,000 rare diseases identified worldwide. These conditions affect a relatively small percentage of the population, making awareness, diagnosis, and treatment especially challenging.Read more
Registration is Now Open for the Rare Diseases Nurses Network Webinar Hosted by the Indian Organisation for Rare Diseases (IORD). It will Highlight the Critical Role Nurses Play in Rare and Undiagnosed Diseases Worldwide. Rare and undiagnosed diseases (RUD) have gained global recognition as a significant health priority following the United Nations (UN) Resolution onRead 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