January 20st 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: 7:30
end: 8:00
Registration
start: 8:30
end: 10:10
Location: Theater
1st Session Genetics and Diagnostics
Diagnostic challenges of rare forms of EB
Importance of genetic diagnosis for disease management
The diagnostic journey in epidermolysis bullosa: the Dutch experience
TEM and IEM in diagnosis and therapy responses of DEB
Atypical and rare variants of epidermolysis bullosa simplex: clinical and genetic insights
Oral Abstract: Immunofluorescence Mapping vs. Electron Microscopy in Epidermolysis Bullosa Comparative Retrospective Study in 84 Genetically Confirmed Patients in Australia
Nicole Tomas
Oral Abstract: Genotype-Phenotype Correlations in Dystrophic Epidermolysis Bullosa
Kun Zhan
Discussion
all speakers
start: 8:30
end: 10:10
Location: Curitiba Room
Debra International: Ibero-American Voice
This session, “The Ibero-American Network,” will present the organic development of a virtual support network that connects DEBRA organizations, medical specialists, caregivers, and people living with EB across Ibero-America.
Florencia Fernandez
(Argentina)
(Debra Mexico)
(Debra Columbia)
(Debra Chile)
start: 10:10
end: 10:20
Location: Theater
Diamond sponsor
Executive Vice president of Chiesi Global Rare Diseases
start: 10:20
end: 10:40
Coffee Break
start: 10:40
end: 12:40
Location: Theater
start: 12:40
end: 13:10
Location: Theater
DEBRA International: International EB Community Advisory Board (EB CAP)
start: 10:40
end: 13:10
Location: Curitiba Room
Nutrition and EB: Perspectives and Clinical Experiences Body Image, Appetite, and Sensory Perception in People with EB: What Nutrition Still Fails
Marcela Peres Rodrigues Madureira
Nutritional Approach in a Pediatric EB Patient: A Case Study in a Brazilian Reference Hospital
Nutritional Aspects of Epidermolysis Bullosa in Adults: Clinical Experience in a Brazilian Tertiary Hospital
Maria Efigênia de Queiroz Leite
Assessing the Need for Gastrostomy in Children with EB
Rosie Jones
Surgical Aspects of Nutritional Support in EB
Living with EB: A Personal Experience with Food and Nutrition
Anna Carolina Ferreira da Rocha
start: 13:10
end: 14:25
Conference Lunch: Sponsored by
start: 14:25
end: 15:25
Location: Theater
DEBRA International: Priority Settings Networking Session & JLA overview
Networking session
Started at EB Congress in Cairo 2024, to regularly question and define the top 10 Priorities in EB for attendees of International EB Congresses. Group lived experience with clinical, research and others.
JLA Review
Research priorities based on key unanswered EB questions shared by the global EB community for EB Simplex (EBS), Dystrophic EB (DEB), Junctional EB (JEB) and Kindler (KEB). What’s next?
Project lead by Debra UK, and supported by Cure EB, Debra Ireland, Debra Canada, EB Research Partnership and Debra International.
start: 15:25
end: 18:25
A global collaboration for people living with EB
DEBRA Research; Strategy and progress
The pre-clinical opportunity
The role for a disease atlas in rare disease
Driving drug development
Panel discussion
Big steps forward with data
Outcome measures and planning for the regulators
From local to global data – registry and patient platform
Jemima Mellerio
Panel discussion and call to action
Location: Theater
start: 15:25
end: 18:25
Location: Curitiba Room
Presentations by
Diedre Callis
Joanna Willen
start: 16:30
end: 16:50
Coffee Break - between foruns
start: 19:30
end: 22:30
Welcome Networking Reception