Stories of Patients Living with Butterfly Skin Disease
Butterfly skin disease (epidermolysis bullosa, EB) causes patients’ skin to tear and hurt even with the gentlest touch. Wounds are difficult to heal, and caring for them is a daily challenge - physically and emotionally. At CREATIC, the Centre of Excellence at the Faculty of Medicine, Masaryk University, we focus on the research, development, and manufacturing of cell and gene therapies for rare diseases. One of the conditions we are working on is EB.
In collaboration with the patient organization DEBRA Czech Republic and physicians at University Hospital Brno, we have initiated a clinical trial of a medicinal product based on mesenchymal stromal cells, which support wound healing and help reduce inflammation. Early results suggest that the therapy is well tolerated and has the potential to improve patients’ quality of life.
An essential part of this journey is our partnership with DEBRA, helping patients and their families feel supported and less alone. You can now learn more about their lived experiences through the exhibition “Rare Encounters”, located at the University Campus in Bohunice (2nd floor, left corridor, near the entrance to the library). One of the exhibition panels also introduces the work of CREATIC.
We invite you to stop by and read these powerful stories throughout September 2025. They remind us of the resilience that patients and their families draw on every day, often through tears, but always looking for new reasons for hope and joy.
