
Learning from the Pandemic to Improve Care for Vulnerable Communities: The Perspectives and Recommendations from the Rare Disease Community
By: Raquel Castro, Erwan Berjonneau and Sandra Courbier
References
- 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 . - 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 . - 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 . - EURORDIS. 2020. Rare Disease Patients’ Experience of COVID-19. Accessed February 2, 2021, from
http://download2.eurordis.org/rbv/covid19survey/COVID19_EN.pdf . - 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 . - INNOVCare. 2018. Bridging the gaps between health and social care: recommendations. Accessed February 2, 2021, from
https://innovcare.eu/bridging-the-gaps-between-health-and-social-care-results-of-the-eu-funded-project-innovcare-2018/https://innovcare.eu/recommendations/ . - INNOVCare. 2018. Bridging the gaps between health and social care: results of the EU-funded project INNOVCare. Accessed February 2, 2021, from
https://innovcare.eu/bridging-the-gaps-between-health-and-social-care-results-of-the-eu-funded-project-innovcare-2018/ . - Rare2030. 2020. Foresight study in rare disease policy. Accessed February 2, 2021, from
https://www.rare2030.eu/ .
DOI: https://doi.org/10.5334/ijic.5812 | Journal eISSN: 1568-4156
Language: English
Submitted on: Feb 17, 2021
Accepted on: Feb 17, 2021
Published on: Mar 4, 2021
Published by: Ubiquity Press
In partnership with: Paradigm Publishing Services
Publication frequency: 4 issues per year
Keywords:
© 2021 Raquel Castro, Erwan Berjonneau, Sandra Courbier, published by Ubiquity Press
This work is licensed under the Creative Commons Attribution 4.0 License.