Invitation to professionals for the BUR-EB PROJECT
If you are professional and from any EU country you can Participate to the BUR-EB Project!
The WP5 from BUR-EB project is looking for clinical experts with direct experience in EB (medical doctors or nurses).
If you are willing to participate, please kindly provide your contact information and consent by filling out a short questionnaire: click here
More Information: This Bur-EB WP5 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.
Bur-EB would like to discuss with you, as professionals, your experiences regarding EB patients’ disease management focusing on empowerment, shared decision making, and capacity building. Through this process, they aim to develop a Patient Journey Map for EB. Patient’s Journey Maps are graphical representations of trajectories of care that can be 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, here.
What will your participation mean? Bur-EB is inviting you as a healthcare professional with experience in EB to participate in this co-creation process. Participation will entail sharing your knowledge and clinical experience in a 60 minutes online group focal or interview that would help them define the clinical pathway of EB that will be carried out between May and July 2023 depending on your availability. During the meeting they will present you the project, discuss which is the best itinerary of care and propose to you further possibilities to engage in the co-creation process.