Learning from the Pandemic to Improve Care for Vulnerable Communities: The Perspectives and Recommendations from the Rare Disease Community-Reference-Cited by-同舟云学术

Learning from the Pandemic to Improve Care for Vulnerable Communities: The Perspectives and Recommendations from the Rare Disease Community

Published:2021 Issue:1 Volume:21 Page:
ISSN:1568-4156
Container-title:International Journal of Integrated Care
language:en
Short-container-title:

Author:

Castro Raquel^ORCID,Berjonneau Erwan,Courbier Sandra^ORCID

Publisher

Ubiquity Press, Ltd.

Subject

Health Policy,Sociology and Political Science,Health(social science)

Reference8 articles.

1. EURORDIS. 2019. Achieving Holistic Person-Centred Care to Leave No One Behind: A contribution to improve the everyday lives of people living with a rare disease and their families. Accessed February 2, 2021, from https://www.eurordis.org/carepaper.

2. EURORDIS. 2017. Juggling care and daily life: The balancing act of the rare disease community. Accessed February 2, 2021, from http://download2.eurordis.org.s3.amazonaws.com/rbv/2017_05_09_Social%20survey%20leaflet%20final.pdf.

3. EURORDIS. 2020. How has COVID-19 impacted people with rare diseases? Accessed February 2, 2021, from https://download2.eurordis.org/rbv/covid19survey/covid_infographics_final.pdf.

4. EURORDIS. 2020. Rare Disease Patients’ Experience of COVID-19. Accessed February 2, 2021, from http://download2.eurordis.org/rbv/covid19survey/COVID19_EN.pdf.

5. EURORDIS. 2020. EURORDIS open letter to policy makers: Recommendations to protect people living with a rare disease during the COVID-19 pandemic. Accessed February 2, 2021, from http://download2.eurordis.org.s3.amazonaws.com/documents/pdf/EURORDIS%20Open%20Letter%20COVID-19.pdf.

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1. Impact of the COVID-19 Pandemic on People Living With Rare Diseases and Their Families: Results of a National Survey;JMIR Public Health and Surveillance;2024-02-14

2. Living with rare genetic disease during the COVID-19 pandemic: A qualitative study of adolescents and young adults with Li-Fraumeni syndrome;Rare;2024

3. Lack of Information on the Effects of COVID-19 on Rare Pathologies Has Further Hampered Access to Healthcare Services;Frontiers in Public Health;2022-03-30

4. Fatigue and activity management education for individuals with systemic sclerosis: Adaptation and feasibility study of an intervention for a rare disease;Musculoskeletal Care;2022-02-06

5. Integration of Mental Health Support Teams in COVID-19 Units within French General Hospitals: A Qualitative Study;International Journal of Integrated Care;2022