• 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

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Guiding the guideline developers

DEBRA International is leading the development of a series of Clinical Practice Guidelines (CPGs) for EB. Supporting those leading the development of the guidelines is imperative for the success of the project.

The guidelines provide information on the best approach to EB medical care for clinicians and patients worldwide. They are therefore incredibly worthwhile but the task of developing them is not straight-forward and can be challenging to those involved. It can be helped however by understanding how the very best guidelines medicine has to offer have been developed. To this end, we recently organised for those developing EB guidelines to attend a course to learn about just that.

EB guideline developers (and potential developers) from the areas of nutrition, wound care and hand therapy, together with a couple of us from DEBRA, attended and came away inspired.

Grateful thanks to all the experts in SIGN (Scottish Intercollegiate Guidelines Network), for being so supportive and kindly granting our wish for a course on the topic. A huge thank-you also, to the wonderful EB experts who gave their time to attend.

Group picture: Workshop attendees

EB experts attending the course