Information for the EB Community regarding COVID-19

The current outbreak of the coronavirus (SARS-CoV-2; trigger of the disease COVID-19) has led to great uncertainty and many questions, especially in families with children or adults with chronic diseases such as EB.

Here you will find helpful information and recommendations for people with EB and their caregivers, nurses and other health professionals who work with EB patients during the current COVID-19 pandemic. This information is continuously updated as new knowledge becomes available.

The team of the EB Outpatient Clinic is of course available in the current situation under the known contact details by email and phone for your questions.

COVID-19 Information Booklet for people living with EB

In cooperation with EB specialists from various disciplines, DEBRA International has created a very informative brochure for the EB-Community. The booklet is available in various languages.

Emergency - Unscheduled Stay in a Hospital

In an emergency, an EB patient may be admitted to a hospital where the patient's EB history is unknown. In this case, the patient or their relatives must inform the medical staff immediately. The staff must be aware of the increased vulnerability of the skin and other tissues, so that appropriate caution is taken with the initial care of the patient.

It is advisable to have a printed version of this emergency information ready to hand to hospital staff.