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In May 2025, rare disease research advanced significantly with breakthroughs in AI diagnostics, CRISPR therapies, and rapid genetic testing. IORD presents a curated round-up of the month’s most impactful developments.

May 2025: Rare Disease Updates, New Discoveries, Diagnostics, and Therapies

By IORD | 0 comment
In May 2025, rare disease research advanced significantly with breakthroughs in AI diagnostics, CRISPR therapies, and rapid genetic testing. IORD presents a curated round-up of the month’s most impact
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At the 78th World Health Assembly (WHA) in Geneva, Member States unanimously adopted the landmark resolution “Rare Diseases: A Global Health Priority for Equity and Inclusion,” co-sponsored by India, Egypt, Spain and 38 others.

78th WHA Takes Historic Step with Rare Diseases Resolution, 10-Year Global Plan Approved

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 India among 41 Member States who co-sponsored the ResolutionGeneva, 24 May 2025 – At the Seventy-eighth World Health Assembly (WHA) in Geneva, Member States unanimously adopted the landmark resolutio
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India’s Rare Disease Burden Demands Grassroots Action, Not Just Policy Reform. Read IORD CEO & President Prof Ramaiah Muthyala's views in this interview with www.healthissuesindia.com

India’s Rare Disease Crisis: Why Grassroots Solutions Are Urgently Needed

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The following is an excerpt from a three-part interview series featuring IORD CEO & President Prof. Ramaiah Muthyala. In this segment, he speaks to Health Issues India about the urgent need for a
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Rare Disease Awareness in India Dr. Ramaiah Muthyala's Strategic Insights

Advancing Rare Disease Awareness in India: Dr. Ramaiah Muthyala’s Strategic Insights

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The following is an excerpt from a three-part interview series featuring IORD CEO & President Prof. Ramaiah Muthyala. In this segment, he speaks with Health Issues India about the pressing need to
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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

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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

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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

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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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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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  • Home
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    • Management Committee
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    • Newsletter Subscription
  • Rare Diseases
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  • Gallery
    • Photo Gallery
      • World Rare Disease Day – 2023
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    • 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