EB Congress 2026 Brazil: A Transformative Global Gathering

From 20–22 January 2026, the EB 2026 International Congress took place in São Paulo, Brazil, bringing together the global epidermolysis bullosa (EB) community for an inspiring three-day event. Organised by DEBRA Brasil in partnership with DEBRA International and EB Clinet, the Congress marked a historic milestone as the first International EB Congress to be held in South America.

The Congress welcomed more than 520 participants from over 35 countries, delivering 40+ hours of content across a high-level clinical and scientific programme. Above all, the EB Congress 2026 placed people living with EB at the center, creating space to learn together, and build real and lasting connections across the global EB community.

EB Congress 2026 was officially opened by DEBRA International President Ritu Jain, DEBRA Brasil President Leandro Rossi, and Head of EB Clinet and EB Academy, Sophie Kitzmüller, who welcomed participants from around the world.

DEBRA International Sessions and Key Contributions

DEBRA International was proud to have played a central role throughout EB Congress 2026 through a series of different sessions focused on collaboration, data collection and sharing, priority setting, lived experience, and organisational development.

DEBRA International introduced the proposal for an International EB Community Advisory Board (EB CAP), bringing together global EB community leaders to strengthen international collaboration and ensure that lived experience continues to inform global EB initiatives.

This was followed by a session lead by DEBRA Research dedicated to moving forward with a global registry and patient platform, highlighting the importance of coordinated patient registries and data platforms. Discussions focused on how shared data can support research, improve clinical understanding, and drive better outcomes for people living with EB worldwide.

DEBRA International also hosted the DEBRA International: Priority Settings Networking Session & JLA (James Lind Alliance) survey results overview. Building on work initiated at previous congresses, participants collaborated to identify and define the 10 key priorities in EB, which were voted on throughout the remainder of the Congress.

Across the final two days, DEBRA International facilitated structured sessions for low, medium, and high-resource DEBRA groups, designed to foster growth and the sharing of ideas. These sessions enabled both established and emerging DEBRA and EB organisations to benchmark, develop, and strengthen their organisations, while enhancing a strong international EB network to support advocacy, healthcare collaboration, social support, and national membership needs.

In addition, the EB Without Borders session encouraged international dialogue on best practices, collaboration, and strategies to strengthen DEBRA and EB networks globally. These discussions highlighted the importance of cross-border knowledge sharing to support patient care, advocacy, and organisational development.

Another deeply impactful session was the Empowering Voices Forum: Caring Together – Patients, Families & Clinicians. This powerful forum brought together lived experiences from young people living with EB in Mexico and Colombia, alongside parents and caregivers from France and Canada, highlighting the diversity of EB journeys across different countries and healthcare systems.

The EB 2026 Congress concluded with a panel exploring how “soft” global policy, from UN and WHA Rare Diseases resolutions and the WHO Skin Resolution to national rare disease plans, combined with the WHO Global Action Plan on Rare Diseases, can transform outcomes for people living with EB. DEBRA International committed to translating these commitments into real integration within national health systems.

Youth Voices at the Heart of EB Congress 2026

A defining and deeply impactful element of EB Congress 2026 was the strong presence of the DEBRA International Youth Council. During dedicated sessions and on the main stage, Youth Council members shared their personal experiences of growing up and living with EB, offering honest and powerful insights into daily life, resilience, the challenges faced, and the importance of life beyond EB.

These sessions placed lived experience firmly at the center of the Congress, creating moments of reflection and connection. The openness and vulnerability shown by the Youth Council resonated strongly with clinicians, researchers, and community members alike.

DEBRA International extends its sincere thanks to the Youth Council members for their bravery, leadership, and invaluable contributions. Their voices continue to guide and strengthen the global EB community as it moves forward together.

A Community United in Purpose

EB Congress 2026 was defined not only by its scientific excellence but also by the strength of the connections formed between people living with EB, families, clinicians, researchers, and advocacy organisations. The EB Congress 2026 demonstrated the power of global collaboration grounded in lived experience.

DEBRA International wishes to thank all DEBRA groups who participated, as well as all speakers who courageously shared their experiences and expertise of EB. We look forward hearing more about the move forward with scientific research, registry and sharing information and updates that continue to improve care and outcomes for people with EB.

Finally, DEBRA International extends its gratitude to the sponsors; Chiesi Global Rare Diseases, Krystal, Molnlyke, EB Research Partnership, Castle Creek Biosciences, Abeona Therapeutics, AOP Health, DEBRA Research, URGO Medical, Paradigm Therapeutics, Cure EB, and Eliksa Therapeutics who made this Congress possible and congratulates DEBRA Brasil on the tremendous success of hosting such a landmark event. The momentum built through shared learning, priority setting, and youth leadership will continue to inform and advance collective efforts to improve care, support research, and strengthen the global EB community.

EB Congress 2026 in photographs