News

Givlaari safe, effective for acute hepatic porphyria patients: Study

Givlaari (givosiran) safely led to reductions in porphyria attacks and improved the quality of life of people with acute hepatic porphyria (AHP) in Japan in an expanded access program, according to newly shared results. The researchers noted that earlier trial data had “indicated that [Givlaari] may be an important treatment option…

Choreographing her comeback: Dancing through life with AIP

It’s been about eight years since Hannah, a dancer and dance teacher, experienced her first acute hepatic porphyria (AHP) attack, but she can still clearly recall the intensity of the sharp stabbing sensation in her abdomen. The overwhelming pain, as well as fatigue, dizziness, and nausea, kept returning, their…

Acute hepatic porphyria prevalence more common in women

Acute hepatic porphyria (AHP) is more commonly seen in women in Denmark, with acute intermittent porphyria (AIP) the the most frequent subtype. That’s according to a recent study that also found that patients with high levels of porphobilinogen, a porphyrin precursor that builds up to toxic levels in AHP…

Scenesse improves life quality in EPP adults: Real-world study

Short- and long-term treatment with Scenesse (afamelanotide) improves life quality in adults with erythropoietic protoporphyria (EPP), according to the largest real-world study of its kind. The therapy’s safety profile among those over 70 was consistent with that of the overall patient population, with nausea, cold-like symptoms, headache, and fatigue…