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Abstract
In 2014, a group of women, mothers and caregivers with children diagnosed with a rare disease participated in a socio-anthropological project aimed at understanding how these women build their identity in the particular circumstances of these pathologies and expanding the knowledge on the difficulties they experience. Methodologically, each participant had to use self-photography to answer the question: What does it mean for you to be a caregiver of a person with a rare disease? The result of this study allows us to reflect on the sociocultural construction of identity through the power of some photographs loaded with meaning and able to create a reality. The concept of care is inserted as a rite of passage, so alive, it manifests in a particular construction of time and space where that identity transits.
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