Children with a rare congenital genetic disorder: a systematic review of parent experiences

von der Lippe, C., Neteland, I. & Feragen, K.B.; Orphanet J Rare Dis 17, 375 (2022). doi:10.1186/s13023-022-02525-0 

 Coordinated care, and a more holistic approach in the follow up of children with rare genetic disorders is needed. International collaboration on research, diagnostics, producing scientific correct and understandable information available for health care professionals and lay people should be prioritized.