European Reference Networks for rare diseases: the vision of patients

被引：3
|
作者：
Andersen, Terkel [1 ]
Le Cam, Yann [1 ]
Weinman, Ariane [1 ]
机构：
[1] European Org Rare Dis EURORDIS, Paris, France
来源：
BLOOD TRANSFUSION | 2014年 / 12卷
关键词：
D O I：
10.2450/2014.0039-14s
中图分类号：
R5 [内科学];
学科分类号：
1002 ; 100201 ;
摘要：
引用
收藏
页码：S626 / S627
页数：2
相关论文
共 50 条
  • [1] European Reference Networks (ERN) - Importance for the Care of Patients with rare Diseases in Germany
    Graessner, Holm
    [J]. MEDIZINISCHE GENETIK, 2017, 29 (01) : 8 - 12
  • [2] Will European Reference Networks herald a new era of care for patients with rare and complex diseases?
    Azzopardi-Muscat, Natasha
    Brand, Helmut
    [J]. EUROPEAN JOURNAL OF PUBLIC HEALTH, 2015, 25 (03): : 362 - 363
  • [3] European Reference networks for rare diseases: what is the conceptual framework?
    Véronique Héon-Klin
    [J]. Orphanet Journal of Rare Diseases, 12
  • [4] European Reference networks for rare diseases: what is the conceptual framework?
    Heon-Klin, Veronique
    [J]. ORPHANET JOURNAL OF RARE DISEASES, 2017, 12
  • [5] The European Reference Networks for rare and complex diseases respond to the Ukrainian crisis
    Dollfus, Helene
    Arzimanoglou, Alexis
    Scarpa, Maurizio
    [J]. LANCET REGIONAL HEALTH-EUROPE, 2022, 19
  • [6] Rare respiratory diseases are ready for primetime: from Rare Disease Day to the European Reference Networks
    Humbert, Marc
    Wagner, Thomas O.
    [J]. EUROPEAN RESPIRATORY JOURNAL, 2017, 49 (02)
  • [7] The context for the thematic grouping of rare diseases to facilitate the establishment of European Reference Networks
    Evangelista, Teresinha
    Hedley, Victoria
    Atalaia, Antonio
    Johnson, Matt
    Lynn, Stephen
    Le Cam, Yann
    Bushby, Kate
    [J]. ORPHANET JOURNAL OF RARE DISEASES, 2016, 11
  • [8] The context for the thematic grouping of rare diseases to facilitate the establishment of European Reference Networks
    Teresinha Evangelista
    Victoria Hedley
    Antonio Atalaia
    Matt Johnson
    Stephen Lynn
    Yann Le Cam
    Kate Bushby
    [J]. Orphanet Journal of Rare Diseases, 11
  • [9] The European Reference Network for Rare Neurological Diseases
    Reinhard, Carola
    Bachoud-Levi, Anne-Catherine
    Baeumer, Tobias
    Bertini, Enrico
    Brunelle, Alicia
    Buizer, Annemieke I.
    Federico, Antonio
    Gasser, Thomas
    Groeschel, Samuel
    Hermanns, Sanja
    Klockgether, Thomas
    Kraegeloh-Mann, Ingeborg
    Landwehrmeyer, G. Bernhard
    Leber, Isabelle
    Macaya, Alfons
    Mariotti, Caterina
    Meissner, Wassilios G.
    Molnar, Maria Judit
    Nonnekes, Jorik
    Ortigoza Escobar, Juan Dario
    Perez Duenas, Belen
    Renna Linton, Lori
    Schoels, Ludger
    Schuele, Rebecca
    Tijssen, Marina A. J.
    Vandenberghe, Rik
    Volkmer, Anna
    Wolf, Nicole I.
    Graessner, Holm
    [J]. FRONTIERS IN NEUROLOGY, 2021, 11
  • [10] A unique e-health and telemedicine implementation: European Reference Networks for rare diseases
    Gulhan, Ibrahim
    [J]. JOURNAL OF PUBLIC HEALTH-HEIDELBERG, 2020, 28 (02): : 223 - 225
12345