The Rs 16-cr drug named Zolgensma was administered to 23-month-old baby Ellen with Spinal Muscular Atrophy (SMA) Type 1, which is an extremely rare genetic disease. If one is diagnosed with ultra-rare genetic disease Spinal Muscular Atrophy (SMA) Type 1 at the earliest stage, the only option available now is to get Zolgensma, the world’sRead 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