UZ Leuven to be reference hospital for coordinating care of EB patients

Personalised multidisciplinary care

Epidermolysis bullosa is a rare and usually a hereditary skin condition in which severe blisters form on the skin. Treatment and follow-up of EB patients in complex, and requires a multidisciplinary approach with special attention to social and psychological support. 

To meet their specific needs, an individual care plan is drawn up for every patient, based on an extensive multidisciplinary medical assessment. The diagnosis, symptoms and functioning of the patient are carefully mapped out. The care plan is also coordinated with the patients, their GPs and other care providers involved. 

Coordination of care ensures that doctors, nurses, therapists, social workers and GPs work more closely together and are well coordinated. This way, it is always clear who provides which care. In addition, regular consultations are held to adapt care to the changing needs of the patient. This reduces stress for them and their families and makes their care process more transparent.

Recognition and support

Dr. Caroline Colmant, medical coordinator of the EB centre: “For years, we have been working hard to improve care for patients with epidermolysis bullosa. This convention is an important acknowledgement of our work and gives us the means to better support all care providers involved. This will improve the quality of care for all Belgian EB patients considerably.”

UZ Leuven was was al erkend binnen het Europese referentienetwerk ERN-Skin voor zijn expertise op het vlak van EB. The new convention now also provodes financial support for the care coordinators within the EB team, so that they can perform their coordinating role with the appropriate resources.