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Experiences and Concerns of Patients with Recurrent Attacks of Acute Hepatic Porphyria: A Qualitative Study

BACKGROUND: The acute hepatic porphyrias (AHPs) are rare inborn errors of heme biosynthesis, characterized clinically by life-threatening acute neurovisceral attacks. Patients with recurrent attacks have a decreased quality of life (QoL); however, no interactive assessment of these patients’ views h...

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Enregistré dans:
Détails bibliographiques
Publié dans:Mol Genet Metab
Auteurs principaux: Naik, Hetanshi, Stoecker, Mikayla, Sanderson, Saskia C., Balwani, Manisha, Desnick, Robert J.
Format: Artigo
Langue:Inglês
Publié: 2016
Sujets:
Accès en ligne:https://ncbi.nlm.nih.gov/pmc/articles/PMC5083146/
https://ncbi.nlm.nih.gov/pubmed/27595545
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1016/j.ymgme.2016.08.006
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