25 March 2020

The current guidelines regarding COVID-19 exposure and preventive measures can be found on the World Health Organisation (WHO) website.

Guidelines in English

Guidelines in French

In order to inform the neuromuscular community we have prepared the following information to keep the community up to date on best practices for managing the global spread of SARS-CoV-2 (COVID-19).

The new virus is called SARS-CoV-2, which is part of the family of betacoronaviruses. The disease caused by SARS-CoV-2 is now known as COVID-19.

The virus is spread from 1) person-to-person exposure (principal means of transmission) and 2) surfaces exposed to the virus. Exposure is by respiratory droplets produced when an infected person coughs or sneezes leading to transmission to others in close proximity. A challenge is that some transmission can occur before an infected individual becomes ill making it hard to isolate that individual.


Symptoms may appear 2-14 days after exposure and include fever, cough, and/or difficulty breathing.


For neuromuscular disease patients, it is important that you seek prompt medical attention if you or anyone in your household is identified with symptoms consistent with COVID-19 or in case of documented exposure to an individual who has tested positive. Before seeking care, you should contact by telephone the help lines established in your country or your usual healthcare provider. In case you need to be seen by your healthcare provider it is important to notify them of your symptoms and potential exposure to the virus, prior to attending the office. This will ensure that proper precautions can be taken to help keep others getting infected or exposed. Your healthcare provider will provide you with guidance regarding your symptoms and if you should be tested.

You should attend an Emergency Room or Urgent Care facility if you are having shortness of breath or experiencing worsening symptoms. But it is important that you call the emergency line in your country and notify them of the suspicion of COVID19 before you go. By doing that, they will be able to take the appropriate protective measures for your journey to hospital and your arrival.

The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission


“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit ec.europa.eu/health/ern