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 Professionals”, held at the District Bar Association Hall on Tuesday. He emphasized the critical role that legal professionals play in raising awareness about rare diseases andRead more
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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 awareness. Vijayawada, Andhra Pradesh: The Indian Organisation for Rare Diseases (IORD) has initiated a strategic collaboration with the Andhra Pradesh government to strengthen the state’s rare disease ecosystem,Read more
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 family—not just against the disease, but against every passing day that seemed to steal a little more of his childhood. “We started regular MRIs,Read more
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 (AIP). Jagruti Rajendra Sanghvi’s diagnosis for Acute Intermittent Porphyria (AIP) came after nearly four years of severe and unexplained abdominal pain, repeated hospitalizations, and extensive misdiagnoses rangingRead more
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. From innovative tools at AIIMS to global success stories in treatment and awareness, these developments mark a turning point in how rare genetic conditions areRead more
India among 41 Member States who co-sponsored the Resolution Geneva, 24 May 2025 – At the Seventy-eighth 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. The resolution directs WHO Director-General Dr. TedrosRead more
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 ground-up approach to rare disease care in India. Read more at www.healthissuesindia.com Did you know that nearly one-third of the global rareRead more
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 raise rare disease awareness across India and offers key recommendations to improve early diagnosis, train frontline healthcare workers, and integrate rare diseases intoRead more
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 India and highlights NPRD’s progress, persistent gaps in diagnosis, treatment, and the need for disease-specific approaches. Read more at healthissuesindia.com RareRead more
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 Conference – in Pune. A seven-member team of final-year MBBS students presented their in-depth research titled “Dual Perspectives on Rare Diseases: An Analysis of DiagnosticRead more