Our BUR-EB project ( is seeking to build an international community of people with Epidermolysis Bullosa (EB), their care givers, and relevant healthcare professionals from 7 EU countries (France, Germany, Hungary, Italy, Spain, Austria and Bulgaria) to co-create Patient Journey Maps and self-care informational materials. Stakeholders of this community – and particularly EB patients – will be able to connect between them and to face the disease with the support and strength of a group that knows and lives with the same constraints and difficulties.

We would like to discuss with you your experiences and needs regarding self-management (empowerment, shared decision making, capacity building).

Through this process, we aim to develop a Patient Journey Maps for each EB type (simplex, junctional, dystrophic, kindler).

Patient’s Journey Maps are graphical representations of trajectories of care used to identify needs, create self-care informational materials, or redesign health services. Here and here you can consult examples of such maps.

Self-care informational materials will be also developed for the prioritised capacity building needs. You can find examples of self-care materials in our BUR-EB Library, available at this link. The exact number of materials, extension and format (e.g., online printable brochures or video recordings with subtitles) will be decided with a co-creation process, using questionnaires, social networks or emails.

What will your participation mean? Participation will be online and mainly in English. You will be asked to talk about various topics related to your disease and its care. These topics will be previously decided considering patients’ interests and preferences. We envisage your engagement through the participation in:

  • a community Moodle environment (online learning platform); and
  • online workshops.

These activities will be carried out from September 2023 for at least 6 months. We are open to any suggestions to adapt participation activities based on topics or actions that you may find most engaging.

If you are willing to participate, please kindly provide us with your contact information and consent by filling out a short questionnaire:

We look forward to hearing from you soon, thank you for your collaboration!