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.