In this brief memoir, IORD Secretary Dr. Krishnaji Rao reflects on his personal journey into rare diseases, guided by hope and driven by advocacy.
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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.
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.
Rare diseases, though affecting a small percentage of the population, represent a significant public health challenge in India. The Indian Organisation for Rare Diseases (IORD) has been at the forefront of advocating for policies, raising awareness, and improving treatment access. Rare diseases not only lead to the loss of human productivity but also place aRead more
The following excerpt is from a Times of India news story dated June 23, 2024, discussing the unavailability of orphan drugs in India, featuring Prof. Ramaiah Muthyala, CEO & President of IORD. HYDERABAD: Though India manufactures most of the key active pharmaceutical ingredients (APIs) for over 400 FDA-approved orphan drugs for rare diseases, patients backRead more
In this study, a three-member team of researchers led by Pragya Chaube makes a strong case for using RBSK for better management, diagnosis and treatment of rare diseases in India.
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
The following is an excerpt from an interview conducted by Pharma Intelligence with Prof Ramaiah Muthyala, President & CEO of Indian Organization for Rare Diseases (IORD), on central government’s exemption of customs duty on imported drugs and food items recommended for special medical purposes to treat rare diseases. You can read the complete story writtenRead more
The Union Health & Family Welfare Ministry has officially approved the “National Policy for Rare Diseases 2021” on 30th March 2021. This development comes in the wake of the Delhi High court pulling up the union health ministry and setting a deadline of 30th March 2021 to notify the National Health Policy for Rare DiseasesRead more