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.
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Michael Grivas, a Brugada Syndrome survivor from Greece, whose experience inspired the Hippocrates AI Assistant, shares his inspiring story.
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.
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.
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.