Grid 2 Columns

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

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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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

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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

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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

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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

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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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Grid 2 Columns

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

Michael Grivas: My Personal Story with Brugada Syndrome

Natco Wins Patent Battle, Makes SMA Drug Affordable in India

My Journey into Rare Diseases – A Calling of the Heart

Prime9 News Panel Discussion Sheds Light on Rare Diseases

How IORD Spurred Major Policy Shifts and Community Awareness

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

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

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

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