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Closing Critical Gaps in India's Rare Disease Framework: A Vision from Dr. Ramaiah Muthyala

From Policy to Patients: Addressing Gaps in Rare Disease Care

By IORD | 0 comment
The following is an excerpt from a three-part interview series featuring IORD CEO & President Prof. Ramaiah Muthyala. In the first part, he speaks to Health Issues India on rare disease care in In
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Kakatiya Medical College students present their groundbreaking research on rare diseases at the Annual UG Medical Research Conference held at AFMC, Pune, on May 5, 2025.

Kakatiya Medical College Shines at AFMC Annual UG Medical Research Conference in Pune

By IORD | 0 comment
Kakatiya Medical College (KMC), Warangal, made a proud mark at the Annual UG Medical Research Conference held on May 5, 2025, at the prestigious Armed Forces Medical College (AFMC) -Illuminati Confere
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Prof. Ramaiah Muthyala (left, sitting) discussing innovative solutions for rare diseases at the 2025 World Orphan Drug Congress in Boston. With a focus on policy reforms and access to affordable medications, the panel addressed the urgent need for systemic change in rare disease care globally

Prof. Ramaiah Muthyala Calls for Policy Reforms at World Orphan Drug Congress-2025

By IORD | 0 comment
Prof. Ramaiah Muthyala discussed challenges and solutions for rare disease access at the 2025 World Orphan Drug Congress in Boston.He highlighted the global economic burden of rare diseases and the un
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• The Indian drug regulator CDSCO has exempted orphan drugs from mandatory testing at ports to speed up patient access.

India Fast-Tracks Orphan Drug Imports: Port Testing Waived to Boost Patient Access

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New policy lifts mandatory port testing for orphan drugs, accelerating treatment availability for rare disease patients. New Delhi: In a significant policy shift aimed at ensuring quicker access to li
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Osmania General Hospital Performs World's First Liver Transplant for Rare Marfan-Linked Hepatopulmonary Syndrome

OGH Makes History with Rare Liver Transplant

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Telangana Chief Minister A. Revanth Reddy praised Osmania General Hospital for successfully saving a youth’s life through a complex surgery.In a historic medical achievement, doctors at Osmania Genera
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Prof. (Dr.) Ramaiah Muthyala, President & CEO of the Indian Organization for Rare Diseases (IORD) and Director at the University of Minnesota, delivered a keynote address on the theme "Healthy Beginnings, Hopeful Futures" during the 342nd International Webinar hosted by RJS PBH-RJS Positive Media.

RJS PBH Webinar: Prof. Ramaiah Muthyala’s Keynote on World Health Day 2025

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The following is the transcript of the address delivered by Prof. (Dr.) Ramaiah Muthyala, President & CEO, Indian Organization for Rare Diseases (IORD), Professor & Director, University of Min
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Prof. Ramaiah Muthyala, CEO & President of IORD, inaugurates the World Rare Disease Day 2025 conference in Vijayawada by lighting the ceremonial lamp in the presence of dignitaries.

World Rare Disease Day 2025: IORD Advocates for Policy & Awareness

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Vijayawada: The Indian Organization for Rare Diseases (IORD), a non-profit advocacy body, convened a critical conference titled “RAISE THE AWARENESS - RARE DISEASES: Advocate Public Policy, Promote Di
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This is a transcribed speech of Indian Organisation for Rare Diseases (IORD) President and CEO, Prof. Ramaiah Muthyala delivered at the World Rare Disease Day 2025 conference in Vijayawada, organized by the IORD.

Prof Ramaiah Muthyala: A Call for Policy Change and Rare Disease Healthcare in Andhra Pradesh

By IORD | 0 comment
This is a transcribed speech of Indian Organisation for Rare Diseases (IORD) President and CEO, Prof. Ramaiah Muthyala delivered at the World Rare Disease Day 2025 conference in Vijayawada, organized
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This extract is from a poster presented by Indian Organisation for Rare Diseases (IORD) President and CEO, Prof. Ramaiah Muthyala, titled: “Role of Patient Support Organizations and Collaborative Genomics Programs in Enabling Participatory Medicine for Rare Diseases in India: A Case Study of Autosomal Recessive Congenital Ichthyosis” at the Undiagnosed Disease Network Conference, South Korea (Sept 4–6, 2024).

Undiagnosed Disease Network Conference – Congenital Ichthyosis Case Study from India

By IORD | 0 comment
This extract is from a poster presented by Indian Organisation for Rare Diseases (IORD) President and CEO, Prof. Ramaiah Muthyala, titled: “Role of Patient Support Organizations and Collaborative Geno
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At the World Rare Disease Day 2025 conference in Vijayawada organised by Indian Organisation for Rare Diseases, Sri M.T. Krishna Babu, IAS, Special Chief Secretary of Health, Medical & Family Welfare, Government of Andhra Pradesh, emphasized the need to strengthen rare disease care in the state.

Strengthening Rare Disease Care in Andhra Pradesh: Sri M.T. Krishna Babu, IAS

By IORD | 0 comment
This is a transcribed speech of Sri M.T. Krishna Babu, IAS, Special Chief Secretary, Health Medical & Family Welfare, Govt. of Andhra Pradesh highlighting need for Strengthening Rare Disease Care
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This is a transcribed speech of Dr. Vinod K. Paul, Member of the National Institution for Transforming India (NITI) Aayog, on "Manufacturing Drugs for Selected Rare Diseases." He delivered this speech at the World Rare Disease Day 2025 conference, organized by the Indian Organisation for Rare Diseases in Vijayawada, Andhra Pradesh, on February 28, 2025.

Manufacturing Drugs for Selected Rare Diseases: Dr Vinod K Paul

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Manufacturing Drugs for Selected Rare Diseases: Dr Vinod K PaulThis is a transcribed speech of Dr. Vinod K. Paul, Member of the National Institution for Transforming India (NITI) Aayog, on "Manufactur
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Registration is now open for World Rare Disease Day-2025 Conference, organized by the Indian Organisation for Rare Diseases (IORD) at FORTUNE Murali Park, Vijayawada in Andhra Pradesh on 28 February, 2025

Registration is now open for IORD World Rare Disease Day-2025

By IORD | 0 comment
Registration is now open for World Rare Disease Day-2025 Conference, organized by the Indian Organisation for Rare Diseases (IORD) at FORTUNE Murali Park, Vijayawada in Andhra Pradesh on 28 February,
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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