Open letter EURORDIS

In an open letter, EURORDIS-Rare Diseases Europe implores policy makers and authorities to take action to protect people living with a rare disease from becoming even more vulnerable during this crisis in line with the recommendations set out further below. Rare diseases, often chronic, highly complex, progressive and severely disabling, generate specific care needs. The effect of COVID-19 on healthcare and social systems is immense, and directly impacts the care that people living with a rare disease receive during this stressful time, as well as their socio-economic status, education and employment.

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