January 21st 2026 | 8AM - 8PM
The program will include thematic panels and forums covering major topics such as scientific research and innovation, advances in clinical management, and the experiences of the EB community.
Open Forums
Accessible to all participants of the conference. The audience will be encouraged to take part in a lively discussion.
Professional Forums
Educational lessons intended for health care providers working with and/or supporting patients and families in the respective field.
Simultaneous Interpretation
The official language of EB 2026 is English, and the congress will provide simultaneous interpretation (English > Portuguese / English > Spanish) during the sessions.
To access the interpretation, each participant must:
✔️ Bring their own headphones
✔️ Use their mobile phone
✔️ Ensure the device has enough battery to follow the entire program. Tip: also bring a portable charger (power bank).
This measure ensures greater convenience, quality, and accessibility throughout the congress.
start: 8:00
end: 10:30
Location: Theater
DEBRA International
Empowering Voices Forum Caring Together: Patients, Families & Clinicians (8:00)
This forum highlights the voices of those living with EB and their caregivers, as well as their interaction with healthcare professionals. Bringing these perspectives together shows how care decisions are balanced between families and healthcare professionals, and how country-specific conditions (access to specialists, materials, referral centers, and psychological support) shape the experience of EB.
Panel
Caregiver’s Perspective
Ryan Hultman
Lived Experience
David Santiago Vargas
Martin Guadalupe
Youth Council Forum (8:35)
This session brings together DEBRA Jovem Brazil and the DEBRA International Youth Council for a dynamic, youth-led conversation about what it means to live beyond the skin and how young advocates are shaping the future of EB community.
Emily Boros
Giulia Victoria
CPG Status and future prospects (9:10)
Overview of project current, past and next steps. Progress and importance of information to reach high, medium and low resource medical systems.
Sophie Kitzmuller
Pharma and Research Perspectives
From Participants to Partners: Empowering Patients in EB Clinical Trials. (9:20)
Provide diverse views and perspectives for Debra/EB to support future care in EB.
Introduction
The patient perspective
The patient organization perspective
The Clinician perspective
The Industry perspective
The Industry perspective
start: 8:00
end: 10:30
Location: Curitiba Room
Types of EB & Diagnosis
Skin & Wound Care
Pain, Nutrition & Blood Tests
Psychosocial Support & Transition
Sexual Health & Cultural Care
Workforce & Collaboration
Group Discussion & Forum
Annette Downe
Janet Hanson
start: 10:30
end: 10:50
Coffee Break
start: 10:50
end: 12:30
Location: Theater
2nd Session EB skin, mucosae and its challenges
Concordance Between Next-Generation Sequencing and Conventional Clinical/Lab based Diagnostic Approaches in Epidermolysis Bullosa
Dupilumab in RDEB: Breaking the Cycle of Pruritus and Skin Fragility
Skin care and wound management in EBS
Laparoscopic-assisted gastrostomy in EB
Amelogenesis imperfecta in EB
Oral abstract: Mental Health in Epidermolysis Bullosa Psychological Care for Patients and Their Families
Oral abstract: Low-level laser therapy in Junctional Epidermolysis Bullosa
Discussion
all speakers
start: 10:50
end: 12:30
Location: Curitiba Room
DEBRA International: EB without borders, how to go further together
This workshop is designed to present History, present and future goals of this Debra International group. Define continued outreach and program viability.
start: 12:30
end: 13:45
Conference Lunch: Sponsored by
CHIESI-SPONSORED LUNCH PANEL
From Voices to Vision: Building the Future of EB Together
Join us for an engaging session featuring a live interview with a Brazilian patient and a healthcare professional, exploring the daily care burden, psychological impact of EB, significant comorbidities such as squamous cell carcinoma, nutritional issues, and the need for multidisciplinary support. Gain practical insights into resilience and collaboration with care teams, then hear from a multi-stakeholder panel as they address systemic gaps and share solutions to improve diagnosis, shared decision-making, and patient involvement in future research priorities.
Be part of this conversation and help shape a more inclusive future for EB care.
Agenda
Welcome and Introduction
Living with EB: Rodrigo’s Story
Together for EB: Panel Discussion
All panelists
Closing Remarks
All panelists
Leandro Rossi
(President of DEBRA Brazil and Treasurer of DEBRA International)
start: 13:45
end: 15:25
Location: Theater
3rd Session Basic Science for the Understanding of EB
From observations to improvements: pre-clinical models in translational EB fibrosis research
Utilizing discarded dressings to understand wound resolution in EB
Notch signaling in RDEB fibrosis
Airway involvement in JEB and potential therapeutic approaches
Lessons from basement membrane biology
Oral abstract: The EB Cell Atlas: A Framework for Translational Drug Discovery
Oral abstract: Improving skin regeneration in JEB by targeting the integrin αvβ6
Discussion
all speakers
start: 13:45
end: 15:25
Location: Curitiba Room
DEBRA International: Medium resource groups
To foster growth and sharing of ideas to enable established and potential member DEBRA/EB groups to benchmark, develop and strengthen their organizations. Enhance a strong international network in EB for advocacy, healthcare, social support and national membership needs.
Emeline Baillargeault
Erin Hoyos
start: 15:25
end: 15:45
Coffee Break
start: 15:45
end: 17:30
Location: Theater
4th Session Preclinical studies Part 1
Base-Editing Gene Therapy Development for the Most Common Pathogenic COL7A1 Variant in Brazil
Targeting inflammation in DEB with biologics and cellular therapies
Readthrough therapies for DEB and JEB - a critical update
Systemic administration, yet skin-selective therapy for DEB
Keratinocyte Dysfunction as a Driver of Chronic Pain in RDEB
Oral abstract: KLHL24 Mutation Drives Intermediate Filament Degradation, Mitochondrial Dysfunction and Fibrosis in heart failure patients
Veronika Ramovs
Oral abstract: Identifying Molecular Signatures of Disease Heterogeneity in Epidermolysis Bullosa
Priya Garcha
Discussion
all speakers
start: 15:45
end: 17:30
Location: Curitiba Room
Professionals FORUM: Palliative and end-of-life care in EB (end: 18:15)
Demystifying Palliative and End-of-Life Care: Optimizing Quality of Life
End-of life care across-cultures, and beyond EB
start: 17:30
end: 17:45
Award Presentation: The Jouni Uitto, MD, PhD, international Visiting Professorship Lectureship in Molecular Dermatology
start: 17:50
end: 19:10
Poster Viewing Session Day 1: Networking with Drink and Snacks