Introduction to Endo-ERN-scope and mission.
Endo-ERN
Endocrinology
Patient perspective
Rare disease
Journal
Endocrine
ISSN: 1559-0100
Titre abrégé: Endocrine
Pays: United States
ID NLM: 9434444
Informations de publication
Date de publication:
03 2021
03 2021
Historique:
received:
15
12
2020
accepted:
28
12
2020
pubmed:
16
1
2021
medline:
9
7
2021
entrez:
15
1
2021
Statut:
ppublish
Résumé
The official installation of the European Reference Networks in 2017 formed the foundation to improve quality and safety and access to highly specialized health care across the EU for patients affected by rare or low prevalence and complex conditions. The European Reference Network on Rare Endocrine Conditions (Endo-ERN) covers specific expertise from birth to senescence with a specific governance structure characterized by both a pediatric and an adult chair, and equal responsibilities for patient representatives and health care providers. The introduction on the scope and mission of Endo describes the complexity of the Endo-ERN mission and will thrive toward the ultimate aim and mission of the network of reducing health care inequalities across Europe. Specific knowledge and medical expertise of the existing rare endocrine condition is urgently needed, and therefore, raising awareness for Rare Disease Day from the Endo-ERN perspective is imperative.
Identifiants
pubmed: 33449294
doi: 10.1007/s12020-020-02602-z
pii: 10.1007/s12020-020-02602-z
pmc: PMC7809090
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
537-538Références
Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients’ rights in cross-border healthcare: https://eur-lex.europa.eu/legal-content/EN/ALL/?uri=CELEX%3A32011L0024
N. Azzopardi-Muscat, H. Brand, Will European Reference Networks herald a new era of care for patients with rare and complex diseases? Eur. J. Public Health 25(3), 362–363 (2015)
doi: 10.1093/eurpub/cku144
F. de Vries, M. Bruin, A. Cersosimo et al. An overview of clinical activities in Endo-ERN: the need for alignment of future network criteria. Eur. J. Endocrinol. 183(Aug), 141–148 (2020)
doi: 10.1530/EJE-20-0197
Endo-ERN Patient Representatives ePAGs: https://endo-ern.eu/patients/endo-ernpatient-representatives/ (2020)