Improving Health Information for Rare Disease Patients and Caregivers: A Survey of Preferences for Health Information Seeking Channels and Formats-Reference-Cited by-同舟云学术

Improving Health Information for Rare Disease Patients and Caregivers: A Survey of Preferences for Health Information Seeking Channels and Formats

Published:2023-03-28 Issue:2 Volume:23 Page:83-96
ISSN:1532-3269
Container-title:Journal of Hospital Librarianship
language:en
Short-container-title:Journal of Hospital Librarianship

Author:

Wang Ting¹^ORCID,Lund Brady²^ORCID,Dow Mirah¹

Affiliation:

1. School of Library and Information Management, Emporia State University, Emporia, KS, USA

2. College of Information, North Texas State University, Denton, TX, USA

Publisher

Informa UK Limited

Subject

Library and Information Sciences,General Medicine

Link

https://www.tandfonline.com/doi/pdf/10.1080/15323269.2023.2194808

Reference36 articles.

1. National Institute of Health. FAQs about rare diseases [Internet]; n.d. [accessed 2023 Jan 17]. https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases.

2. The European Union Policy in the Field of Rare Diseases

3. EURORDIS. What is a rare disease? [Internet]. Rare Disease Europe; n.d. [accessed 2023 Jan 17]. https://www.eurordis.org/information-support/what-is-a-rare-disease/.

4. Parents’ Concerns About Issues Related to Their Children's Genetic Conditions

5. Categories of Information Need Expressed by Parents of Individuals with Rare Genetic Disorders in a Facebook Community Group: A Case Study with Implications for Information Professionals

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