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
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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. 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
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 unique barriers in low- and middle-income countries. Efforts in India to reduce orphan drug costs, including the availability of Hydroxyurea for sickle cell diseaseRead more
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 life-saving treatments, the Government of India has exempted orphan drugs from mandatory sampling and testing at port offices. The Central Drugs Standard Control Organisation (CDSCO) announcedRead more
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 General Hospital (OGH), Hyderabad, successfully performed a living donor liver transplant on a 14-year-old boy suffering from rare Marfan Syndrome compounded by very severe Hepatopulmonary Syndrome (HPS)Read more