IORD proposes a Section 8, CSR-supported public-interest pharmaceutical model to ensure affordable access to orphan drugs for millions of Indian patients.
Blog
India is emerging as a global leader in rare disease management, driven by IORD’s efforts since 2005 to advocate, raise awareness, and support millions affected by rare conditions, writes Dr Krishnaji Rao.
In this Prime9 News panel discussion, IORD experts addressed diagnostic challenges, low awareness, and urgent policy gaps in managing rare diseases that often remain undiagnosed despite severity.
Kakatiya Medical College students presents research at Armed Forces Medical College, exposing diagnostic delays, systemic gaps, and patient struggles in India’s rare disease care.
IORD CEO and President Prof. Ramaiah Muthyala calls for policy reforms at the World Orphan Drug Congress 2025, addressing access barriers, costs, and solutions for rare disease care.
IORD CEO & President Prof. Ramaiah Muthyala calls for policy reforms in Andhra Pradesh, emphasizing improved rare disease healthcare, early diagnosis, and stronger government support for affected patients.
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.
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
(This article is written by Prof Ramaiah Muthyala, IORD CEO & President and first appeared in the portal Pharmaclick.co.in in its blog section. The original article can be accessed here) Recent fundraising efforts by some desperate parents of Pompe disease (Glycogen storage disease type II) to buy expensive medicines and prominent associations raising funds viaRead more