Acute Hepatic Porphyria Treatment Now Has NICE Approval and Will Soon be Available Through The NHS
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Acute Hepatic Porphyria Treatment Now Has NICE Approval and Will Soon be Available Through The NHS

Givlaari, a treatment for acute hepatic porphyria (AHP), was first approved in Europe back in March of 2020. However, approval doesn't mean immediate access unfortunately. It's been nearly two years…

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The Porphyria Symposium: Claire’s Experience, and How Conferences Can Better Incorporate The Patient Perspective
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The Porphyria Symposium: Claire’s Experience, and How Conferences Can Better Incorporate The Patient Perspective

Claire Richmond lives with acute hepatic porphyria (AHP). She searched for 19 years to find answers to her unexplained pain. She wasn't diagnosed until she was 32. She recently had…

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“Pink” Urine Helps Diagnose Acute Hepatic Porphyria
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“Pink” Urine Helps Diagnose Acute Hepatic Porphyria

When a 23-year-old woman, who was 6 weeks pregnant, first appeared at the doctor, she was presenting with non-specific symptoms: pale eyelids, abdominal pain, intermittent cramping, and generalized arm and…

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Alnylam Pharmaceuticals Submits New Drug Application for Experimental Acute Hepatic Porphyria Drug
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Alnylam Pharmaceuticals Submits New Drug Application for Experimental Acute Hepatic Porphyria Drug

According to a press release from Alnylam Pharmaceuticals, the Massachusetts-based biopharmaceutical company has completed the submission of its New Drug Application (NDA) for givosiran — its experimental acute hepatic porphyria…

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Better Than A Trip to Disney World? January 2018 Symposium in Orlando Focuses on Porphyrias
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Better Than A Trip to Disney World? January 2018 Symposium in Orlando Focuses on Porphyrias

On January 12-14, 2018 leading minds from around the world will convene in Orlando, Florida for the annual Heme Biosynthesis and the Porphyrias Recent Advances Conference. Yes, it's a mouthful,…

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