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.
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.
Indian Organization For Rare Diseases
Registered Office (India):
Plot No. 397, Road No. 22B, Jubilee Hills, Hyderabad – 500033, Telangana, India.
Phone: +91-9666438880
Email: indiaord@gmail.com