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Home Search results for "Panhematin India"
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 | Rare Disease News | 0 comment | 13 June, 2025 | 7

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