The BUR-EB project has published Educational Materials on Epidermolysis Bullosa (EB) on its website, developed for patients, caregivers, and healthcare professionals. These resources, created collaboratively with direct input from people affected by EB and experts in the field, are now available in Spanish, English, Italian, French, Hungarian, Bulgarian, and German.
The content reflects the voices of those who live with this rare disease on a daily basis, thanks to the active participation of patients, caregivers, and specialists in workshops and focus groups organized between May 2023 and December 2024, with the support of DEBRA Spain, DEBRA Italy, and DEBRA Germany. The topics were prioritized by professionals from different DEBRA organizations and by DEBRA International to ensure their relevance and practical usefulness.
With the multilingual release of the materials, which include infographics, podcasts, videocasts, and workbooks, the BUR-EB project aims to broaden understanding of EB, reduce barriers to accessing information, and empower the global community with reliable, up-to-date resources.
All materials are publicly accessible, downloadable, and can be freely shared. Access all resources here