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Psychosocial Issues in Erythropoietic Protoporphyria- The Perspective of Parents, Children and Young Adults: A Qualitative Study

Erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) are rare photodermatoses, generally presenting in childhood with severe and painful phototoxicity. EPP has been reported to negatively affect quality of life (QoL), but there is limited information on the psychosocial issues faced...

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Kaydedildi:
Detaylı Bibliyografya
Yayımlandı:Mol Genet Metab
Asıl Yazarlar: Naik, Hetanshi, Shenbagam, Shruti, Marie Go, Allysa, Balwani, Manisha
Materyal Türü: Artigo
Dil:Inglês
Baskı/Yayın Bilgisi: 2019
Konular:
Online Erişim:https://ncbi.nlm.nih.gov/pmc/articles/PMC6660424/
https://ncbi.nlm.nih.gov/pubmed/30711301
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1016/j.ymgme.2019.01.023
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