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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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.
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.
IORD highlights gaps in rare disease care, with Prof. Ramaiah Muthyala noting progress under NPRD but stressing persistent challenges in diagnosis, treatment, and need for disease-specific strategies.
IORD and RJS PBH announce an expert-led webinar on rare diseases, focusing on the urgent need for a unified approach to address challenges in India.
In this news article, IORD CEO & President Prof. Ramaiah Muthyala underscores rare disease drug affordability issues, highlighting healthcare disparities, policy limitations, and restricted access to essential treatments in India.
A webinar organized by the Federation of Asian Biotech Associations-US chapter highlighted the socio-economic and emotional impact on the 70 million Indians affected by rare diseases (RDs).
In a landmark ruling, the Delhi High Court ordered the creation of a ₹974 crore National Fund for Rare Diseases for 2024–26, emphasizing patient-centric policies, expanded treatment access, and funding reforms.
The Indian Organization for Rare Diseases (IORD) – a not-for-profit umbrella organisation – hosted a webinar on ‘Rare Diseases: Prevention’ with top global speakers on February 2, 2021. The topic assumes significance, as the estimated rare diseases population in India is about 90 million. Irrespective of what definition we use for rare diseases, more thanRead more