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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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| 發表在: | Mol Genet Metab |
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| Main Authors: | , , , |
| 格式: | Artigo |
| 語言: | Inglês |
| 出版: |
2019
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| 主題: | |
| 在線閱讀: | 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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