Debra International

26/05/2026

DEBRA International was proud to be represented at the Rare Women International Forum in Moscow, Russia, last month where DEBRA International President Ritu Jain delivered an online address during the event, highlighting the importance of international cooperation and patient-led advocacy within the rare disease community.

Thank you to DEBRA Russia/Butterfly Children Foundation and Rare Women for organising such a meaningful forum which brought together the global rare disease community to share experiences, strengthen collaboration, and amplify the voices of women in advocacy.

We were honoured to see DEBRA represented by:
🌍 DEBRA-FRANCE
🌍 DEBRA Croatia
🌍 DEBRA Egypt-Yasmin Foundation
🌍 DEBRA South Africa
🌍 DEBRA International Youth Council
🌍 Debra Mexico
🌍 Fundación Debra Chile

Read more about the sessions and watch them in full ➡️ https://www.debra-international.org/post/debra-groups-represented-at-rare-women-international-forum

22/05/2026

🌍 New multilingual EB educational resources are now available from the BUR-EB project.

Created in collaboration with people living with , caregivers, healthcare professionals and DEBRA organisations, these new resources aim to improve understanding of EB and make reliable information more accessible worldwide.

Available in 7 languages, the resources include:
🎧 Podcasts
📹 Videocasts
📊 Infographics
📘 Interactive workbooks

All materials are free to access, download, and share. Find out more: https://www.debra-international.org/post/bur-eb-project-launches-multilingual-educational-resources-on-eb

With special thanks to DEBRA Deutschland Debra Italia ETS Piel de Mariposa

The BUR-EB project has published a new collection of educational materials on EB, now available in Spanish, English, Italian, French, Hungarian, Bulgarian, and German.

15/05/2026

In 2025, DEBRA International joined DEBRA UK’s James Lind Alliance Priority Setting Partnership study to help identify the most important unanswered research questions for the global EB community. Bringing together people living with EB, families, carers, and healthcare professionals, the study created a clear roadmap for EB research priorities worldwide.

Now, the project has won the 2026 BOBI Award for Best Use of Innovation! A brilliant recognition of collaborative, community-led research creating a better future for EB.

Huge congratulations to DEBRA UK, Synergy Healthcare Research Ltd, all the international study partners and the global EB community who participated in the study on this well-deserved achievement! 👏

Read more about the achievement and the study results on our website ➡️ https://www.debra-international.org/post/global-debra-eb-research-priority-setting-project-wins-industry-award

DEBRA Canada Debra Ireland - The Butterfly Skin Charity Cure EB EB Research Partnership

13/05/2026

Hear more in our write-up about DEBRA International’s time at European Wound Management Association - EWMA in Bremen, Germany from 6–8 May 2026, where we joined over 6,000 global delegates advancing wound care research, education, and clinical practice.

In collaboration with DEBRA Deutschland, DEBRA International co-hosted a well-attended round table session titled “Skinned alive on every day: a round table about the reality of Epidermolysis Bullosa,” hosted by Emeline Baillargeault (DEBRA International & DEBRA-FRANCE).

The discussion brought together clinical and lived-experience perspectives from Dr. Stella Gewert, Ms. Iris Hof, and Andreas Miller, highlighting the complexity of EB care across healthcare systems and daily life.

Highlighting EB care in Germany, the role of specialist centres such as the Freiburg Reference Center for Rare Skin Diseases, alongside multidisciplinary management, nursing care, and the psychosocial and financial burden of EB was central to the presentations. It also reflected on the broader impact on daily life and the importance of coordinated, specialist care.

We extend our sincere thanks to our speakers, Dr. Stella Gewert, Ms. Iris Hof, Andreas Miller, as well as to host Emeline and DEBRA Germany, and all participants for their engagement, insights, and collaboration. EWMA 2026 provided an important platform for strengthening collaboration and advancing awareness and care in epidermolysis bullosa.

Read our full summary here ➡️ https://www.debra-international.org/post/debra-international-attends-the-2026-ewma-conference-in-germany

DEBRA International attended EWMA 2026 in Bremen, co-hosting a round table session on EB with DEBRA Germany, sharing clinical and lived experience.

06/05/2026

Thank you to everyone who joined our DEBRA International guest session at European Wound Management Association - EWMA today, including the 60 attendees who took part in such an engaging discussion 💙

“Skinned alive every day: a round table on the reality of Epidermolysis Bullosa” explored EB from multiple perspectives, covering an introduction to the condition, how care is organised in Germany, and the daily clinical challenges faced. The session also highlighted the lived experience of EB with , the importance of specialised centres and multidisciplinary care, as well as the role of DEBRA International. It concluded with a practical focus on nursing care, including EB wound management and commonly used dressings and medical devices 🩹

A special thank you to our speakers Emeline Baillargeault from DEBRA France/DEBRA International, Dr Stella Gewert senior physician at the Department of Dermatology at University Medical Centre Freiburg, Andreas Miller who lives with EB and is DEBRA Deutschland's Executive Director, and EB nurse specialist Iris Hof for sharing their invaluable expertise and experiences.

06/05/2026

DEBRA Deutschland auf der EWMA 2026 in Bremen

Die EWMA 2026 bringt in dieser Woche Fachleute der modernen Wundversorgung aus der ganzen Welt zusammen – mitten in Bremen.

Für uns ist es eine wichtige Plattform, um die Realität von Epidermolysis bullosa (EB) sichtbar zu machen und die Versorgungssituation aus deutscher Perspektive einzubringen – gemeinsam mit Kolleg:innen von DEBRA International.

📍 Ihr findet uns am Stand H53. Kommt gerne vorbei, wir freuen uns auf den Austausch.

Ein besonderer Programmpunkt ist unsere DEBRA-Gast-Session:
🗓 Heute, 12:30–13:30 Uhr MESZ
📍 Raum „Danzig“

“Skinned alive every day: a round table about the reality of Epidermolysis bullosa”

European Wound Management Association - EWMA DEWU Deutscher Wundkongress & Bremer Pflegekongress Debra International

06/05/2026

We're at European Wound Management Association - EWMA! Connecting with wound care professionals from around the world and sharing the work of DEBRA International in advancing care for people living with epidermolysis bullosa (EB) 🩹💙

Come and say hi to the team at booth H53 👋

Join us later today 12:30–13:30 CEST for our guest session: “Skinned alive every day: a round table on the reality of Epidermolysis Bullosa”

📅 Add it to your programme or calendar so you don’t miss it! https://pag.virtual-meeting.org/Release/ewmadewu2026/en-GB/pag/session/125570

05/05/2026

Find us at EWMA at our new location: Stand H53 👋

The DEBRA International team will be there showcasing our latest work supporting people living with epidermolysis bullosa (EB) and national groups, advancing care, and promoting best practice worldwide. Come by to meet the team and learn more about our global efforts 💙

Plus, don’t miss our guest session on Wednesday 06 May | 12:30–13:30 CEST:

“Skinned alive every day: a round table on the reality of Epidermolysis Bullosa” 🩹 in the Danzig room.

Join clinicians, people living with EB, and EB nurses as they explore the realities of living with EB, with a focus on practical wound care and multidisciplinary care approaches 👩‍⚕️

📅 Be sure to add it to your programme or download it to your calendar so you don’t miss it! https://pag.virtual-meeting.org/Release/ewmadewu2026/en-GB/pag/session/125570

01/05/2026

“Skinned alive every day: a round table on the reality of Epidermolysis Bullosa” 🩹

Join DEBRA International on Wednesday 06 May | 12:30–13:30 CEST for a powerful session exploring the realities of living with EB at European Wound Management Association - EWMA!

Bringing together clinical, patient, and nursing perspectives, this round table will introduce EB and highlight the challenges of managing the condition, with a focus on practical wound care and the vital role of nurses.

📅 Be sure to add it to your programme or download it to your calendar so you don’t miss it! https://pag.virtual-meeting.org/Release/ewmadewu2026/en-GB/pag/session/125570