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Orphanews - EURORDIS survey on the effects of the coronavirus outbreak on the rare disease community

An EURORDIS multi-country survey has pointed out the effects of the current coronavirus pandemic on people with rare diseases. EURORDIS acknowledges that the survey on how the Covid-19 is affecting people living with a rare disease “shows the detrimental impact of coronavirus” on this vulnerable group of patients. Rare diseases patients were called on to answer the survey between 18 and 28 April 2020.

In a press release, EURORDIS highlights that 9 in 10 people living with a rare disease faced care interruption following the Covid-19 outbreak, and that, for 6 in 10, this interruption is detrimental to their health. People with rare diseases are facing challenges, in terms of cancelled surgeries or transplant interventions (half of those interventions were cancelled), or because of cancelled or postponed appointments for rehabilitation therapies, such as speech and physical therapies. Appointments with the general practitioners or with specialists were as well cancelled in 7 out of 10 cases.


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