In this Prime9 News panel discussion, IORD experts addressed diagnostic challenges, low awareness, and urgent policy gaps in managing rare diseases that often remain undiagnosed despite severity.
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Learn how IORD, led by Dr. Ramaiah Muthyala, influenced national policy, raised awareness & advanced patient advocacy across India
IORD emphasized the legal fraternity’s role in rare disease awareness, with Dr. Ramaiah Muthyala urging lawyers to support advocacy, patient rights, and public education initiatives.
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.
In this story, IORD highlights a family’s battle with Adrenoleukodystrophy, underscoring delayed diagnosis, rapid disease progression, and the urgent need for early intervention and accessible treatment options.
IORD features Jagruti Sanghvi’s battle with Acute Intermittent Porphyria, highlighting delayed diagnosis and urging nationwide access to Hemin for effective treatment.
IORD presents May 2025 rare disease breakthroughs, showcasing advances in AI-based diagnostics, CRISPR therapies, and genetic testing, signaling improved detection, treatment, and global progress in care.
The World Health Assembly adopted a historic rare diseases resolution, with India among co-sponsors, approving a 10-year global plan for equitable care, policy action, and inclusion.
IORD highlights India’s rare disease crisis, with Prof. Ramaiah Muthyala urging grassroots solutions to improve access, awareness, and care for millions affected nationwide.
IORD CEO & President Dr. Ramaiah Muthyala provides insights on advancing rare disease awareness in India, stressing early diagnosis, frontline healthcare training, and integration into public health systems.