IORD proposes a Section 8, CSR-supported public-interest pharmaceutical model to ensure affordable access to orphan drugs for millions of Indian patients.
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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.
Read IORD CEO & President Prof. Ramaiah Muthyala’s webinar address at Federation of Asian Biotech Associations webinar on global rare disease burden, challenges, and need for coordinated action.
IORD CEO and President Prof. Ramaiah Muthyala calls for India to address the critical rare disease crisis, emphasizing urgent policy focus, awareness, and improved healthcare response.
The Union Health Ministry has designated Bhopal AIIMS in Madhya Pradesh as a Centre of Excellence (CoE) for treating rare diseases, making it the 12th such hospital in the country under the Rare Disease Policy 2021. The decision was formally taken by the Rare Disease Cell, Union Ministry of Health & Family Welfare (MoHFW), datedRead more
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