Beyond the disease itself: A cross‐cutting educational initiative for patients and families with rare diseases-Reference-Cited by-同舟云学术

Beyond the disease itself: A cross‐cutting educational initiative for patients and families with rare diseases

Published:2020-11-03 Issue:3 Volume:30 Page:693-700
ISSN:1059-7700
Container-title:Journal of Genetic Counseling
language:en
Short-container-title:Jrnl of Gene Coun

Author:

Rovira‐Moreno Eulàlia¹²,Abuli Anna¹²,Codina‐Sola Marta¹²,Valenzuela Irene¹²,Serra‐Juhe Clara¹²,Cuscó Ivon¹²,Borregán Mar¹,Cueto‐González Anna¹²,Vendrell Teresa¹,López‐Grondona Fermina¹,Brun‐Gasca Carme³,Brignani Eduardo⁴,Martínez‐Ribot Laia¹,Garci‐Espejo Regla⁴,Cruz Jordi⁴,García‐Arumí Elena¹⁵,Tizzano Eduardo F.¹²^ORCID

Affiliation:

1. Department of Clinical and Molecular Genetics Hospital Vall d’Hebron Barcelona Spain

2. Medicine Genetics Group Vall d’Hebron Research Institute (VHIR) Barcelona Spain

3. Department of Clinical and Health Psychology Universidad Autónoma de Barcelona Cerdanyola del Vallès Spain

4. Federación Española de Enfermedades RarasDelegación de Cataluña Barcelona Spain

5. Neuromusuclar Disorder and Mitochondria Research Group Vall d’Hebron Research Institute (VHIR) Barcelona Spain

Publisher

Wiley

Subject

Genetics (clinical)

Link

https://onlinelibrary.wiley.com/doi/pdf/10.1002/jgc4.1354

Reference34 articles.

1. Patient Education and Engagement Through Multimedia: A Prospective Pilot Study on Health Literacy in Patients with Cerebral Aneurysms

3. “Is it Going to Hurt?”: The Impact of the Diagnostic Odyssey on Children and Their Families

4. Quality of life in rare genetic conditions: A systematic review of the literature

5. Information Needs in the Precision Medicine Era: How Genetics Home Reference Can Help

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