‘It would be much easier if we were just quiet and disappeared’: Parents silenced in the experience of caring for children with rare diseases

Cited by papers we hold 2

• Time to diagnosis and determinants of diagnostic delays of people living with a rare disease: results of a Rare Barometer retrospective patient survey · 2024
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• The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’ · 2020
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