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Consequences of rare diagnoses for education and daily life: development of an observation instrument
BACKGROUND: Ågrenska, a Swedish national centre for rare diagnoses and health conditions, has arranged courses for families of children with rare diagnoses for over thirty years, and has experienced that the conditions often have complex and varying consequences in the children´s everyday lives, not...
| Autores principales: | , , , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
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BioMed Central
2022
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| Materias: | |
| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9004121/ https://www.ncbi.nlm.nih.gov/pubmed/35413929 http://dx.doi.org/10.1186/s13023-022-02303-y |