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Home Search results for "rare disease policy"
In this insightful article published in PharmaClick, Dr. Krishnaji Rao, Secretary of IORD, explains how India is accelerating progress in rare disease policy, early diagnosis, research innovation, and patient support.

India Steps Forward as a Global Leader in Rare Disease Management

By IORD | IORD in News, IORD Updates, News | 0 comment | 29 November, 2025 | 0

(This article is written by Dr. Krishnaji Rao, IORD Secretary, and first appeared in Pharmaclick magazine on pages 67, 68, and 69. The original article can be accessed here) The Indian Organisation for Rare Diseases (IORD) is a pivotal force championing rare disease—conditions that, while individually uncommon, collectively affect millions. Founded in 2005, IORD representsRead more

In this interview with ABN Andhra Jyothi channel, Dr Ramaiah Muthyala highlights IORD’s journey, contribution, key milestones, advocacy roles, challenges and impact.

How IORD Spurred Major Policy Shifts and Community Awareness

By IORD | ABN Andhra Jyothi, IORD Updates, Rare Disease News | 0 comment | 7 August, 2025 | 0

Learn how IORD, led by Dr. Ramaiah Muthyala, influenced national policy, raised awareness & advanced patient advocacy across India

A webinar organised by the Federation of Asian Biotech Associations-US chapter highlighted the socio-economic and emotional toll on the 70 million Indians affected by rare diseases (RDs)

Webinar Highlights Challenges Presented by Rare Diseases

By IORD | Deccan Chronicle, IORD in News | 0 comment | 21 December, 2024 | 0

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).

The Delhi High Court has extended the tenure of the National Rare Disease Committee (NRDC) for 5 years, empowering it with a broader mandate to strengthen rare disease management in India.

NRDC Extended for Five Years to Boost Rare Disease Initiatives

By IORD | Uncategorised | 0 comment | 16 December, 2024 | 0

The Delhi High Court has extended the tenure of the National Rare Disease Committee (NRDC) for 5 years, empowering it with a broader mandate to strengthen rare disease management in India.

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.

National Fund for Rare Diseases Announced: ₹974 Crore Allocated for 2024–26

By IORD | News, Rare Disease News | 0 comment | 16 December, 2024 | 2

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 following excerpt is from a Times Now news story dated July 4, 2024, highlighting the challenges in addressing the unavailability of orphan drugs in India, despite the country's successful development of COVID vaccines. It features insights from Prof. Ramaiah Muthyala, CEO & President of IORD.

Despite COVID Vaccine Success, Why India Lags in Rare Disease Drug Attention?

By IORD | IORD in News, IORD Updates, Times Now | 0 comment | 9 July, 2024 | 0

The following excerpt is from a Times Now news story dated July 4, 2024, highlighting the challenges in addressing the unavailability of orphan drugs in India, despite the country’s successful development of COVID vaccines. It features insights from Prof. Ramaiah Muthyala, CEO & President of IORD. Dr Ramaiah Muthyala questions why despite being the pharmacyRead more

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  • India: Rare Ophthalmic Disorders Take Centrestage at World Rare Disease Day-2026
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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.

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IORD – Indian Organization for Rare Diseases