Common needs in uncommon conditions: a qualitative study to explore the need for care in pediatric patients with rare diseases.
Rosanne M SmitsEline VissersRosan Te PasNoor RoebbersWout F J FeitzIris A L M van RooijIvo de BlaauwChris M VerhaakPublished in: Orphanet journal of rare diseases (2022)
The results from our study provide directions for research and health care to support young patients with a rare disease or complex condition and their families. Moreover, our results demonstrated that there are overarching concepts across different rare diseases that may be optimally supported with interdisciplinary care.