The coordination among the 11 Centres of Excellence (CoE) for Rare Diseases and their communication with the Ministry of Health and Family Welfare’s technical committee appears to be significantly inadequate and slow, resulting in hassles for rare disease patients. In a heart-wrenching case, Kanna Rudraksh, a seven-month-old baby suffering from Pompe disease (a rare lysosomalRead more
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IORD
Indian Organization For Rare Diseases
(IORD), a not-for-profit umbrella organization represents interests of all stakeholders of Rare Diseases in India including individual patients, patient support groups, health policy advocates and health care providers.
CONTACT US
Indian Organization For Rare Diseases
5th Floor, Vasant Towers,
Behind Shoppers Stop, Begumpet,
Hyderabad – 500016,
Telangana, India.
Phone: +91-9666438880
Email: indiaord@gmail.com