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October 16, 2024 News by Andrea Lobo, PhD

Givlaari found safe, effective for up to 4 years in AIP patients: Study

Note: This story was updated Oct. 25, 2024, to correct that hemin was used during this study to treat porphyria attacks. Long-term use of the approved therapy Givlaari (givosiran) safely led to sustained reductions in porphyria attacks, and in the need for medications to treat such attacks, in…

February 14, 2024 News by Steve Bryson, PhD

Standard treatment efficacy poor in CEP over 5 years, case study shows

Five years of standard treatment did not slow the progression of congenital erythropoietic porphyria (CEP) — the rarest type of porphyria, marked by severe light sensitivity — in a young man in Armenia, according to a study on the first reported case of the condition in that country. For…

November 10, 2021 News by Marisa Wexler, MS

Long-term Givlaari for AHP Found to Ease Pain, Lessen Attack Rate

Long-term treatment with Givlaari (givosiran) lessens rates of porphyria attacks, eases pain, and improves quality of life in individuals with acute hepatic porphyria (AHP), according to two-year interim data from the ENVISION trial. Results were reported in the study, “Efficacy and safety of givosiran for…

Recent Posts

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  • Porphyria warriors: Gone too soon, but not forgotten
  • How I ended the generational curse that is porphyria
  • Acute hepatic porphyria prevalence more common in women
  • AIP patients’ high sugar and fat diet leads to metabolic problems: Study
  • AHP diagnosed in young woman with brain swelling, nerve damage
  • New variegate porphyrias show neurodevelopmental delay, lesions


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