The experience of albinism in France: a qualitative study on dyads of parents and their adult child with albinism

被引：0
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作者：
Hugo Fournier
Marie Hasdenteufel
Constance Garrouteigt
Mathieu Perie
Antoine Gliksohn
Béatrice Jouanne
Smail Hadj-Rabia
Benoit Arveiler
Fanny Morice-Picard
Bruno Quintard
机构：
[1] University of Bordeaux,Laboratory of Psychology (LabPsy) UR 4139
[2] National Institute for Research in Digital Science and Technology,Laboratory of Rare Diseases: Genetics and Metabolism (MRGM) INSERM U1211
[3] Genespoir Association,undefined
[4] Global Albinism Alliance,undefined
[5] APHP Paris Necker-Enfants Malades,undefined
[6] CHU Bordeaux,undefined
[7] University of Bordeaux,undefined
来源：
BMC Medicine | / 22卷
关键词：
Albinism; Rare diseases; Dyadic functioning; Disability adjustment; Visual impairment; Daily life; Systemic approach; Qualitative research;
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