Hospital administrators as forgotten partners in rare disease care: a call to action by the international hospital federation’s global rare pediatric disease network
Until recently, hospital leadership has been an untapped partner in addressing challenges faced by rare disease patients, and they are uniquely positioned to bridge existing gaps. The GRPDN will continue to focus on identifying practical strategies that hospital leaders-regardless of resource level-can implement to improve care for children living with a rare disease.
Authors
- Amy Gaviglio (ORCID: https://orcid.org/0000-0001-7598-3820)
- Andrea Stoesz
- Barbara J. Joers
Institutions
- Gillette Children's Specialty Healthcare (US)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2024-12-04
- DOI
- https://doi.org/10.1186/s13023-024-03459-5
- Citations
- 3
- Primary Topic
- Cystic Fibrosis Research Advances
- Type
- article
- Field-Weighted Citation Impact
- 1.26