• Help people with EB

    Your support of DEBRA International or a national EB group enables us to provide the best quality of life for families and individuals affected by EB.

Donation Account: IBAN AT65 6000 0005 1004 5254, BIC BAWAATWW, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

donate now


Clinical Practice Guidelines: a valuable tool for EB clinicians

EB is a condition that displays many different symptoms, varies widely in severity and can be very complex in nature. Clinical professionals who care for people with EB are presented with constant challenges and decisions as they work to ensure that their patients remain as healthy as possible.

In order to support them in their work and to ensure continuing improvements in EB healthcare, DEBRA International is driving an initiative to develop clinical practice guidelines (CPGs) for EB.

CPGs are guidelines that are designed to support and improve decision-making processes in patient care. They help ensure that clinical care is guided by evidence gained from science (often referred to as evidence-based practice/medicine) and by expert opinion. Not only do CPGs guide medical professionals but they are also valuable in facilitating patients' involvement in their own care.

As there are many different aspects to the care of EB, a series of guidelines, in different topic areas, are being produced. We are extremely pleased that CPGs on Oral Health Care and Wound Care are now complete and available on the DEBRA International website. CPGs in Pain Management and Cancer in EB are in the latter stages of development, and a CPG on Nutrition will follow after that. To ensure their widespread adoption, please help us in making all EB patients and clinicians aware of these guidelines.

DEBRA International would like to thank the many people who are giving their energy and time to this invaluable initiative. To learn more about the value of CPGs, their development and those already completed and available for EB, click here.

Covers of the CPGs for Wound Care