American Porphyria Foundation

Patient Perspective on Acute Intermittent Porphyria with Frequent Attacks: A Disease with Intermittent and Chronic Manifestations

Amy Simon, Farrah Pompilus, William Querbes et al. · Patient · 2018 · 76 citations · Full text

Medicine, Internal Medicine, Iron Metabolism Disorders +7

Erythropoietic protoporphyria: time to prodrome, the warning signal to exit sun exposure without pain—a patient-reported outcome efficacy measure

Debby Wensink, Janneke G. Langendonk, Jessica Overbey et al. · Genetics in Medicine · 2021 · 19 citations · Full text

Medicine, Dermatology, Photodermatology +8

Quantifying the impact of symptomatic acute hepatic porphyria on well‐being via patient‐reported outcomes: Results from the Porphyria Worldwide Patient Experience Research (<scp>POWER</scp>) study

Amy K. Dickey, Kristen Wheeden, Desiree Lyon et al. · JIMD Reports · 2022 · 19 citations · Full text

Pharmacy, Health Sciences, Internal Medicine +14

Patient Perspective on Acute Hepatic Porphyria with Sporadic Attacks: A Chronic Disease with Substantial Health-Related Quality of Life Impacts

Kristen Wheeden, Desiree Lyon Howe, Sue Burrell et al. · Advances in Therapy · 2022 · 15 citations · Full text

Medicine, Internal Medicine, Clinical Epidemiology +10