When rare becomes common : a teajectory in the world of adrenoleukodystrophy
The article deals with the story of a mother who lived the experience of having a child whit adrenoleukodystrophy in the middle of the process of emergence of an institution for the management of people with rare diseases in Brazil. The research design starts from the way rare diseases are constitut...
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| Main Authors: | Souza, Bruna Aline Stoél de, Carniel, Fagner |
|---|---|
| Format: | Online |
| Language: | Portuguese |
| Published: |
Universidade Estadual de Campinas
2020
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| Subjects: | |
| Online Access: | https://econtents.sbu.unicamp.br/inpec/index.php/tematicas/article/view/14169 |
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