Givlaari Effects Sustained Over Time for Patients with Acute Hepatic Porphyria
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Givlaari Effects Sustained Over Time for Patients with Acute Hepatic Porphyria

  In 2019, Alnylam Pharmaceuticals received FDA approval for Givlaari, the first RNAi therapy for patients with acute hepatic porphyria. Although some were initially worried about the therapy's safety 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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Positive Results from Phase 3 Study of Acute Hepatic Porphyria Drug

Earlier this week, a press release from Alnylam Pharmaceuticals, Inc, announced the that the phase 3 study of their experimental acute hepatic porphyria drug Givosiran yielded positive results. According to the…

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Crowd-Source Funding Helps Man with Hepatic Porphyria Finally Receive a Diagnosis and Treatment
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Crowd-Source Funding Helps Man with Hepatic Porphyria Finally Receive a Diagnosis and Treatment

For people who don't live with chronic painful conditions, such as hepatic porphyria, it's hard to imagine the type of intense pain Colin McEwen was in -- both physically and…

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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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Fun in the Sun? How One Little Girl Beat the Summer Heat after an EPP Diagnosis
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Fun in the Sun? How One Little Girl Beat the Summer Heat after an EPP Diagnosis

The American Porphyria Foundation has a section on its website dedicated to telling patient stories. It gives voice to people's experiences and allows them to connect with others and share…

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