The Porphyria Association has been involved in the following publications and research studies. See link for further information:

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Porphyria: often misunderstood and rarely diagnosed - https://www.ogmagazine.org.au/24/1-24/porphyria-often-misunderstood-and-rarely-diagnosed/

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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 - https://pubmed.ncbi.nlm.nih.gov/36636593/