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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IORD marked World Rare Disease Day 2026 highlighting rare ophthalmic disorders, stressing early diagnosis, better referrals, and expanded genetic, multidisciplinary care with expert participation.
IORD will host a World Rare Disease Day 2026 conference in Hyderabad on rare ophthalmic conditions, with LVPEI and Rainbow Children’s Hospital.
IORD proposes a Section 8, CSR-supported public-interest pharmaceutical model to ensure affordable access to orphan drugs for millions of Indian patients.
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.
In this brief memoir, IORD Secretary Dr. Krishnaji Rao reflects on his personal journey into rare diseases, guided by hope and driven by advocacy.
Learn how IORD, led by Dr. Ramaiah Muthyala, influenced national policy, raised awareness & advanced patient advocacy across India
IORD proposed an MoU with the Andhra Pradesh government to strengthen rare disease care, aiming to enhance policy action, workforce training, and public awareness at the state level.