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.

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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
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article

Hospital administrators as forgotten partners in rare disease care: a call to action by the international hospital federation’s global rare pediatric disease network

Amy Gaviglio, Andrea Stoesz, Barbara J. Joers
3 citations
Orphanet Journal of Rare Diseases
Cystic Fibrosis Research Advances
1.26
article

Hospital administrators as forgotten partners in rare disease care: a call to action by the international hospital federation’s global rare pediatric disease network

Amy Gaviglio, Andrea Stoesz, Barbara J. Joers
article en
3 citations

Abstract

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.

Orphanet Journal of Rare DiseasesVol. 19(1)
Gillette Children's Specialty Healthcare (US)
Industry, innovation and infrastructure
Openalex Percentile: Top 18%
Cystic Fibrosis Research Advances
1.26
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