Learn how IORD, led by Dr. Ramaiah Muthyala, influenced national policy, raised awareness & advanced patient advocacy across India
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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.