Epidermolysis bullosa

Others

National and international reference entities

<p><span data-contrast="auto">To help ensure the best possible attention for people with EB and their families around the world, </span><strong><span data-contrast="auto">DEBRA International</span></strong><span data-contrast="auto"> has a long-term initiative to develop </span><strong><span data-contrast="auto">clinical practical guides (CPG)</span></strong><span data-contrast="auto"> for EB. The CPG give information on the </span><strong><span data-contrast="auto">practical improvements</span></strong><span data-contrast="auto"> and </span><strong><span data-contrast="auto">recommendations</span></strong><span data-contrast="auto"> which guide the </span><strong><span data-contrast="auto">health </span></strong><span data-contrast="auto">and </span><strong><span data-contrast="auto">social care</span></strong><span data-contrast="auto"> professionals while they tend to people with EB. The guidelines are based on the </span><strong><span data-contrast="auto">evidence</span></strong><span data-contrast="auto"> obtained from medical science and, when there is no such evidence, in the </span><strong><span data-contrast="auto">opinion of experts</span></strong><span data-contrast="auto">, both professionals and patients. In such a complex pathology as EB, where the healthcare approaches differ a lot, the CPG provide a </span><strong><span data-contrast="auto">very useful framework</span></strong><span data-contrast="auto"> to support and improve the clinical and social care decision-taking.</span></p>
<p><span data-contrast="auto">Next is the list of Clinical Practical Guides published up to date:</span></p>
<ol>
<li data-leveltext="%1." data-font="Calibri" data-listid="2" data-list-defn-props="{&quot;335552541&quot;:0,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769242&quot;:[65533,0],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;%1.&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}" data-aria-posinset="1" data-aria-level="1"><strong><span data-contrast="auto">Management of cutaneous squamous cell carcinoma in patients with epidermolysis bullosa: best clinical practice guidelines</span></strong><span data-contrast="auto"> (</span><a href="https://www.debra-international.org/cancer-management-in-eb-cpg"><span data-contrast="none"><span data-ccp-char="">https://www.debra-international.org/cancer-management-in-eb-cpg</span></span></a><span data-contrast="auto">).</span></li>
</ol>

Last modified
19 February 2025