Because of the uncertainty and misinformation regarding COVID-19, we asked Dr Michel Hoffmann, member of ALAN’s Scientific Advisory Board, neurologist at the Centre Hospitalier du Nord and member of the Committee for Orphan Medicinal Products at the European Medicines Agency (EMA), if there are any particular precautions that people living with a rare disease should be taking during the current pandemic.
Dr Hoffmann:” People living with a rare disease often have an increased risk of complications in case they develop another serious disease.
Catching a COVID-19 infection is particularly dangerous for people living with a rare metabolic disease, with a compromised immune system, either due to the disease or due to an essential treatment, or those people with a weak respiratory system. Elderly people are at an even higher risk.
During the exceptional situation of the COVID-19 pandemic, it is very important to neither take any additional medication (besides your usual treatment), nor to stop your usual essential treatment without consulting your treating physician who understands your rare disease.
It is also extremely important to follow the guidelines by the Ministry of Health regarding social distancing and personal protective measures.”