The parents of children with rare diseases face exceptional circumstances which influence their role as parents. Sometimes, the role of caregivers is added to that of parents. On other occasions, especially with the most serious cases, the former becomes more prominent than the latter. There are also cases in which both roles coexist separately, allowing them to be parents and caregivers in equal measure. However, whichever group they belong to, they need trust and to overcome fear in order to live their experience without overwhelming anxiety.
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