DEBRA International attends the 2026 EWMA Conference in Germany

DEBRA International was delighted to return to the European Wound Management Association (EWMA) conference jointly with the DEWU Deutscher Wundkongress on 6-8 May 2026 in Bremen, Germany. The conference was a truly global event, reaching 6,364 registered participants from 81 countries. During the three-day event, delegates attended 955 oral presentations, explored 661 e-poster presentations, and visited an extensive exhibition area featuring 166 exhibitors, including DEBRA International.

As part of the programme, DEBRA International contributed to an important round table session titled “Skinned alive on every day: a round table about the reality of Epidermolysis Bullosa”. The session focused on the daily realities of living with epidermolysis bullosa (EB), highlighting both the clinical challenges and the lived experiences of those affected.

The session was hosted by Emeline Baillargeault from DEBRA International and DEBRA France and featured a panel of speakers:

• Dr. Stella Gewert, senior physician at the Department of Dermatology at the University Medical Center Freiburg, Germany, with a clinical specialization in epidermolysis bullosa. Dr. Gewert also heads the Conservative Treatment Day Clinic at the Department of Dermatology. Her clinical and research work focuses on the diagnosis and complex multidisciplinary management of EB, and she is actively involved in clinical and translational research in wound healing.

• Ms. Iris Hof, nurse at the Department of Dermatology at the University Medical Center Freiburg, Germany, who has worked in the Conservative Treatment Day Clinic for the past 15 years with a specialization in epidermolysis bullosa. In 2022, she completed further training to become a wound expert.

• Andreas Miller, Executive Director of DEBRA Germany, member of the DEBRA International Executive Committee, and a person living with EB.

  
  

The session welcomed approximately 60 attendees and sparked meaningful discussion among healthcare professionals and participants interested in EB care and wound management.

Throughout the session, the speakers explored a wide range of topics related to the realities of living with and caring for people with EB. Dr. Stella Gewert opened the discussion with an overview of EB and how EB care is organised in Germany, including the role of specialised expert centres and the daily challenges faced in clinical practice. She shared insights and data from the Freiburg Reference Center for Rare Skin Diseases, highlighting the psychosocial and financial burden of EB.

She shared findings showing that the majority of disease-related costs, estimated at €58,417, arise from informal caregiving (54%) and wound dressings and bandaging materials (16%), while professional care represented only 0.5% of costs. In addition, out-of-pocket EB-related costs amount to €5,354 and are believed to be significantly underestimated. The presentation concluded with the important message that the psychosocial burden of EB should not be underestimated, even for individuals living with milder forms of EB.

Ms. Iris Hof focused on the role of nurses in EB care and the impact of EB beyond the clinical presentation. Her presentation highlighted the many areas of life affected by EB, including financial pressures, mental health and wellbeing, social relationships, romance and sexuality, nutrition, education, and physical activity. She also discussed nursing assessment tools, dressing changes, wound care preparation, blister management, bathing and skincare routines, and the vital role nurses play in supporting patients and families beyond the treatment room.

Andreas Miller shared the perspective of a person living with EB, speaking about what it means to live with the condition on a daily basis and the importance of receiving care within specialised EB centres. He also provided an overview of the work and impact of DEBRA Germany and DEBRA International in supporting people living with EB and their families worldwide. During the Q&A session, several nurses engaged directly with the panel, with many questions focusing on the clinical management of EB and directed to Dr. Gewert. The discussion highlighted the growing interest in understanding the complexities of EB wound care and the importance of multidisciplinary collaboration.

The session provided a valuable opportunity to raise awareness of EB within the wider wound care community and to share perspectives from both healthcare professionals and people living with EB. The combination of clinical expertise, nursing experience, and lived experience created a powerful and informative discussion.

DEBRA International Executive Director, Mariangela Pellegrini, said: "Attending the European Wound Management Association Conference was a truly inspiring experience and a reminder of how important collaboration is in advancing wound care globally.

I was proud to represent DEBRA International that contributed to the conversation on Epidermolysis Bullosa (EB) through our dedicated session. Seeing people living with EB and patient advocates included within such an important international congress matters, not only to raise awareness of the realities faced by people living with EB, but also to ensure that rare diseases are part of wider discussions on innovation, care, pain management, and quality of life.

It is also encouraging to see increasing recognition of the importance of patient representation in congresses that bring together researchers, nurses, clinicians, industry, and patient organisations. These spaces are strongest when lived experience is part of the conversation alongside science and clinical expertise.

A heartfelt thank you to our speakers, partners, organisers, and everyone who joined the session and engaged with the discussion."

DEBRA International would like to thank the EWMA organisers, speakers, and all attendees who contributed to the session and the wider conversations throughout the conference. Events such as EWMA continue to play an important role in strengthening collaboration, increasing awareness, and improving care for people living with EB worldwide.