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• Amol Maurya, a 7-year-old boy from Pratapgarh, Uttar Pradesh, is undergoing high-risk treatment for Cerebral Adrenoleukodystrophy (CALD).

A Heartbreaking Battle Against ALD: A Family’s Fight for Their Son’s Life

Back in 2020, three-year-old Amol was diagnosed with Adrenoleukodystrophy (ALD), a genetic disorder linked to the X chromosome. That marked the beginning of a long and exhausting journey for his fami
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Jagruti Rajendra Sanghvi, Co-founder of the Indian Porphyria Association, a Patients' Support Group. speaks about her decades-long battle with Acute Intermittent Porphyria.

My Battle with Porphyria: Why Jagruti Urges Nationwide Access to Hemin

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Jagruti Rajendra Sanghvi, Co-founder of the Indian Porphyria Association and a rare disease survivor, urges for national access to Hemin, the only effective treatment for Acute Intermittent Porphyria
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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

By IORD | 0 comment

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

By IORD | 0 comment

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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Grid 3 Columns

A Heartbreaking Battle Against ALD: A Family’s Fight for Their Son’s Life

My Battle with Porphyria: Why Jagruti Urges Nationwide Access to Hemin

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

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

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

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

From Policy to Patients: Addressing Gaps in Rare Disease Care

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

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

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