IORD features Jagruti Sanghvi’s battle with Acute Intermittent Porphyria, highlighting delayed diagnosis and urging nationwide access to Hemin for effective treatment.
Blog
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.
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.
Kakatiya Medical College students presents research at Armed Forces Medical College, exposing diagnostic delays, systemic gaps, and patient struggles in India’s rare disease care.
IORD CEO and President Prof. Ramaiah Muthyala calls for policy reforms at the World Orphan Drug Congress 2025, addressing access barriers, costs, and solutions for rare disease care.
India waives port testing for orphan drugs, as announced by Central Drugs Standard Control Organisation, accelerating imports and improving timely access to life-saving treatments for rare disease patients.
In a first, Osmania General Hospital doctors perform a life-saving liver transplant on a teen with Marfan Syndrome and severe Hepatopulmonary Syndrome.