Report: Rare variegate porphyria shows neurodevelopmental delay, skin lesions
Researchers said light-sensitive or fragile skin may point to a primary genetic porphyria in children with developmental delays and epilepsy.| Porphyria News
Researchers said light-sensitive or fragile skin may point to a primary genetic porphyria in children with developmental delays and epilepsy.| Porphyria News
A real-world study analyzed the medical records of EPP and XLP patients in the U.S. who waited about three years for a porphyria diagnosis.| Porphyria News
Givlaari reduced porphyria attacks, improved quality of life in patients with AHP, according to an expanded access program in Japan.| Porphyria News
Alnylam Act, a free genetic testing program, is now offering its services to certain patients in the U.S. and Canada suspected of having AHP.| Porphyria News
COVID-19 triggered an attack of acute intermittent porphyria (AIP) in a 31-year-old woman, according to a report in Japan.| Porphyria News
A longer delay in the diagnosis of erythropoietic protoporphyria (EPP) is associated with a negative impact on patients’ lives, particularly at the emotional level, according to a recent study in the […] The post Longer delay in diagnosis negatively impacts EPP patients’ lives: Study appeared first on Porphyria News.| Porphyria News – The Web's Daily Resource for Porphyria News
The cases of six women with acute intermittent porphyria, five of whom were misdiagnosed, show the challenges of getting an AIP diagnosis.| Porphyria News
Andrea Lobo is a science writer for Porphyria News with a PhD in cell biology/neurosciences. She covers the latest news and information on a variety of porphyria topics.| Porphyria News
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