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India now has 15 Centres of Excellence for rare diseases under NPRD 2021 following the addition of RIMS Imphal, AIIMS Patna, and Assam Medical College.

India Expands Rare Disease Centres of Excellence Network to 15 Under NPRD 2021

By IORD | 0 comment
India’s rare disease healthcare infrastructure has expanded to 15 Centres of Excellence (CoEs) under the National Policy for Rare Diseases (NPRD), 2021, with the inclusion of three new government inst
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Dr. Muralidhar Ramappa Highlights Integrated Care for Rare Ophthalmic Disorders at World Rare Disease Day 2026 in Hyderabad

From Diagnosis to Care: Dr. Muralidhar Ramappa on Rare Eye Diseases

By IORD | 0 comment
This is a transcribed scientific presentation by Dr. Muralidhar Ramappa, Clinician Scientist and Head of the Center for Rare Eye Diseases and Ocular Genetics at LV Prasad Eye Institute, delivered at t
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Join the Global Albinism Alliance community meeting in Delhi on May 4, 2026. Open to persons with albinism and families. Register now to attend.

Global Albinism Alliance to Host Community Meeting in Delhi on May 4

By IORD | 0 comment
Delhi: The Global Albinism Alliance will host a special one-day meeting in Delhi on May 4, 2026, inviting persons with albinism and their families to come together for learning, discussion, and connec
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IORD has sought a place on the South East Asia RDI Steering Committee to support rare disease advocacy, care and policy.

IORD seeks seat on South East Asia rare disease task force panel

By IORD | 0 comment
Hyderabad: The Indian Organization for Rare Diseases (IORD) has expressed interest in joining the South East Asia Rare Disease Initiative (SEARDI) Task Force Steering Committee, saying it wants to hel
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Dr. Anil Kumar Mandal, Senior Consultant Ophthalmologist at Centre for Sight, Banjara Hills, delivered a powerful keynote address at IORD’s World Rare Disease Day 2026.

Dr. Anil Kumar Mandal: 40-Year Journey Advancing Care in Congenital Glaucoma

By IORD | 0 comment
This is a transcribed keynote address by Dr. Anil Kumar Mandal, Senior Consultant Ophthalmologist at Centre for Sight, Banjara Hills, delivered at the Indian Organisation for Rare Diseases (IORD) Worl
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Indian Organisation for Rare Diseases (IORD) CEO and President Dr. Ramaiah addressing the audience on Rare Ophthalmic Disorders at World Rare Disease Day 2026 event organised at Hyderabad on 28 February in collaboration with L V Prasad Eye Institute (LVPEI) and Rainbow Children’s Hospital.

World Rare Disease Day 2026: Dr. Ramaiah Muthyala Focuses on Rare Ophthalmic Disorders

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 2026 event in Hyderabad, focusing on rar
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Inaugural session of World Rare Disease Day 2026 conference in Hyderabad, with experts from IORD, LVPEI, and Rainbow Children’s Hospital

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

By IORD | 0 comment
The event, attended by leading ophthalmologists, ocular geneticists, pediatric specialists, researchers, and patient advocates, spotlighted the urgent need for early diagnosis, stronger referral pathw
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On World Rare Disease Day 2026, IORD, along with LV Prasad Eye Institute and Rainbow Children’s Hospital, is hosting a scientific conference in Hyderabad focused on Rare Ophthalmic Disorders

IORD to Host World Rare Disease Day 2026 Conference Focused on Rare Ophthalmic Conditions

By IORD | 0 comment
Registration is now open. Limited seats available — register now using this link.Hyderabad, February 2026: The Indian Organisation for Rare Diseases (IORD), in collaboration with L V Prasad Eye Instit
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In this letter, IORD urges the Government of India to ensure affordable access to orphan drugs for rare disease patients through a public-interest, Section 8 non-profit pharmaceutical model supported by CSR funding.

Bridging India’s Rare Disease Treatment Gap Through Public-Interest Pharmaceuticals

By IORD | 0 comment
Reproduced below is the letter addressed by IORD President and CEO Prof. Ramaiah Muthyala to the Government of India, advocating affordable access to orphan drugs for rare disease patients through a p
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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

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(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
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IORD leaders urge inclusive, global collaboration to turn the WHA Rare Disease Resolution into real action at the RDI Asia-Pacific Webinar on October 9.

From Hope to Action: IORD Calls for Inclusive Global Action on Rare Diseases

By IORD | 0 comment
The RDI Regional Webinar on “From the WHA Resolution to Action: Next Steps for Asia Pacific” marked a pivotal moment for regional cooperation on rare diseases.  “Hope” — that was the word chosen
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Michael Grivas, a Brugada Syndrome survivor from Greece, whose experience inspired the Hippocrates AI Assistant, shares his inspiring story.

Michael Grivas: My Personal Story with Brugada Syndrome

By IORD | 0 comment
Diagnosed with Brugada Syndrome at 27, Michael Grivas from Greece turned his personal health struggle into a mission to help others. His experience inspired the creation of the Hippocrates AI Assistan
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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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Email: indiaord@gmail.com

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  • Home
  • About Us
    • Management Committee
    • Advisory Board
    • Newsletters
    • Newsletter Subscription
  • Rare Diseases
  • Research
  • Services
  • Donate
  • Gallery
    • Photo Gallery
      • World Rare Disease Day – 2023
      • World Rare Disease Day 2020
    • Video Gallery
      • World Rare Disease Day – 2020
      • World Rare Disease Day – 2019
      • World Rare Disease Day – 2018
  • Blog
  • Contact Us
IORD – Indian Organization for Rare Diseases