Global Porphyria Advocacy Coalition

Homepage: gpac-porphyria.org

ROR: 01sdf0d21

OpenAlex ID: I4405283507

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

2022 · Amy Dickey, Kristen Wheeden, et al. · JIMD Reports · 20

Impact of acute hepatic porphyria attack frequency on patient-reported outcomes: results from the porphyria worldwide patient experience research (POWER) study

2022 · Amy Dickey, Kristen Wheeden, et al. · Journal of Hepatology · 1

Empowering children and young people with Erythropoietic Protoporphyria (EPP)/X-linked Erythropoietic Protoporphyria (XLP): Outcomes of attending a disease-specific residential camp

2026 · Victoria A. McGuire, Samuel Morrison, et al. · Molecular Genetics and Metabolism

Givosiran treatment over 36 months for people with acute hepatic porphyria: a plain language summary

2026 · Kristen Wheeden, Sue Burrell, et al. · Future Rare Diseases

S1372 Changes in Acute Hepatic Porphyria Health Impacts Since Initial Diagnosis: Results From the Porphyria Worldwide Patient Experience Research (POWER) Study

2022 · Stephen L. Meninger, Danielle Nance, et al. · The American Journal of Gastroenterology

S1342 The Impact of Acute Hepatic Porphyria on Mental Health: Results From the Porphyria Worldwide Patient Experience Research (POWER) Study

2022 · Stephen L. Meninger, Danielle Nance, et al. · The American Journal of Gastroenterology

P1722: Changes in Acute Hepatic Porphyria Health Impacts Since Initial Diagnosis: Results From the Porphyria Worldwide Patient Experience Research (power) Study

2022 · D. Nance, D. Lyon, et al. · HemaSphere

Pb2354: the Impact of Acute Hepatic Porphyria on Mental Health: Results From the Porphyria Worldwide Patient Experience Research (power) Study

2022 · D. Nance, D. Lyon, et al. · HemaSphere

S1253 POWER (Porphyria Worldwide Patient Experience Research) Study: Impact of Acute Hepatic Porphyria Assessed Through an International Patient Survey

2021 · Amy Dickey, Stephen L. Meninger, et al. · The American Journal of Gastroenterology

Works count: 9

Citation count: 41