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Becoming a Rare Disease Parent: An Interpretative Phenomenological Analysis of Parent-Caregivers’ Postpartum Experiences

Hannah Rochelle Davidson, Auteur ; Shani Gelles, Auteur ; Krystyna R. Keller, Auteur ; Melissa Zajdel, Auteur |

Dans Qualitative health research (Vol. 34 n°1-2, Janvier 2024)

"Rare diseases constitute a group of conditions that are individually rare, but in aggregate impact between 3 and 6% of the world population. Many of these conditions present during infancy and involve substantial caregiving responsibilities, of[...]

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