Soins. Pédiatrie, puériculture
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Soins Pediatr Pueric
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Soins Pediatr Pueric · Sep 2013
[A multiprofessional team for children living with sickle-cell anemia].
Sickle-cell anaemia is a rare hereditary disease characterised by abnormal blood cells. It causes highly painful vaso-occlusive crises. Multi-professional care is encouraged through the intervention of a network.
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There are between 6 000 to 8 000 rare diseases, of which 80% are of genetic origin. Most of them appear very early in life. Patients and their families are faced with diagnostic delays, inadequate management as well as a lack of information and resources. A large number of these pathologies are also sometimes called orphan diseases because the populations concerned do not find any treatments.