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Delhi High Court clears Natco to launch Risdiplam generic version Natsmart, making SMA treatment affordable for thousands of Indian families.

Natco Wins Patent Battle, Makes SMA Drug Affordable in India

By IORD | 0 comment
IORD welcomes the landmark judgment by the Delhi High Court clearing Natco Pharma to launch its generic Risdiplam (Natsmart) for Spinal Muscular Atrophy.In a landmark judgment, the appellate  Delhi Hi
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In this brief memoir, IORD Secretary Dr. Krishnaji Rao reflects on his personal journey into rare diseases, guided by hope and driven by advocacy.

My Journey into Rare Diseases – A Calling of the Heart

By IORD | 0 comment
In this brief memoir, IORD Secretary Dr. Krishnaji Rao reflects on his personal journey into rare diseases, guided by hope and driven by advocacy.There are moments in life when destiny does not shout,
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Prime9 News aired a compelling panel discussion on rare diseases, featuring experts Dr. Amaresh Rao, Dr. Krishnaji Rao Muthyala, and Professor Ramaiah Muthyala. The discussion explored the challenges of diagnosing rare conditions, gaps in awareness, and the urgent need for policy action to address these life-threatening illnesses, which remain largely undiagnosed despite scientific advances.

Prime9 News Panel Discussion Sheds Light on Rare Diseases

By IORD | 0 comment
This is a translated excerpt from Prime9 News panel discussion on rare diseases, featuring experts Dr. Amaresh Rao, Dr. Krishnaji Rao Muthyala, and Professor Ramaiah Muthyala. The discussion explored
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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 | 0 comment
This is an abridged excerpt from an interview with Dr. Ramaiah Muthyala, Founder and CEO of the Indian Organization for Rare Diseases (IORD), given to senior journalist Kezia of ABN Andhra Jyothi news
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Dr. Ramaiah Muthyala addressed the Khammam Bar Association, highlighting the legal community’s role in rare disease advocacy and patient rights.

Legal Fraternity’s Role Vital in Rare Disease Awareness: Dr. Ramaiah Muthyala

By IORD | 0 comment
Khammam: Dr. Ramaiah Muthyala, President of the Indian Organization for Rare Diseases (IORD), addressed the Khammam Bar Association at an awareness program on “Rare Diseases – Role of Legal Profession
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The Andhra Pradesh government is exploring a landmark MoU with the Indian Organisation for Rare Diseases (IORD) to strengthen rare disease diagnosis, training, and policy. Health Minister Satya Kumar Yadav backs awareness efforts, including a rare disease mention in PM Modi’s Mann Ki Baat and a Tollywood-led documentary campaign.

IORD proposes MoU with Andhra Pradesh government to boost rare disease care

By IORD | 0 comment
This potential collaboration represents a major milestone for rare disease advocacy in India and could create new benchmarks for state-level policy action, medical workforce training, and public aware
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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

By IORD | 0 comment
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

By IORD | 0 comment
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

By IORD | 0 comment
 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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Rare Disease Awareness in India Dr. Ramaiah Muthyala's Strategic Insights

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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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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      • World Rare Disease Day – 2023
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      • World Rare Disease Day – 2020
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  • Blog
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IORD – Indian Organization for Rare Diseases