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“I Can’t Take off My Shirt or Do My Own Hair”—A Qualitative Investigation of the Symptoms and Impact Experience of Children and Adolescents with Fibrodysplasia Ossificans Progressiva (FOP)
INTRODUCTION: Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare, severely disabling, autosomal dominant, congenital disease characterized by progressive multi-focal heterotopic ossification (HO) of skeletal muscle, ligaments, tendons, and fascia. Past FOP studies have focused on the clini...
Autores principales: | Markowitz, Jessica T., Rofail, Diana, Vandenberg, Gerrit, Baldasaro, Jessica, Sanchez, Robert J., Pignolo, Robert J., Keen, Richard, Davis, Michelle, Marquis, Patrick |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer Healthcare
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9013184/ https://www.ncbi.nlm.nih.gov/pubmed/35429282 http://dx.doi.org/10.1007/s12325-022-02096-3 |
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