Ultra-rare ultra-care: Assessing the impact of caring for children with ultra rare diseases

CONCLUSION: Although caregivers of URDs children experience physical and emotional strain, they are often neglected by the healthcare system. A bio-psychosocial approach to URDs should therefore also include family caregivers' physical and psychosocial needs. Apart from financial and emotional support, enhancing access to genetic testing and newborn screening should be prioritised.PMID:38071849 | DOI:10.1016/j.ejpn.2023.12.003
Source: European Journal of Paediatric Neurology - Category: Neurology Authors: Source Type: research