Organisation for epidermolysis bullosa patients

Followed by donorinfo since: 
2009

Mission

Epidermolysis bullosa (EB) is a rare chronic and hereditary skin disorder that manifests itself from birth. In people who have EB, the different layers of the skin do no properly attach. As a result, painful blisters form spontaneously or due to friction, pressure and heat all over the body, sometimes also on the mucosa. This can have far reaching consequences, like damage to the eyes, problems with growth, malformation of the esophagus and the hands and feet, as well as problems eating, and can lead to disability and a lot of pain. The disease puts heavy physical, financial and emotional pressure on the families.
Debra vzw wants to offer practical, media land psychosocial support. Its goals are advocacy (affordable and specialized care), information, contact with other patients and training of specialized nurses.

 

Debra only works with volunteers and the assistance they offer is free of charge.

This organisation communicates in Dutch and French. Please consult the information in Dutch or French to learn more.

Release by Donorinfo - Last modification : 21/11/2018