Wednesday, 22 January 2020

The third day of the Congress, open to Industry and Standard ticket holders, focuses on research challenges, as well as clinical management strategies, case histories, and support models.

For any queries related to the programme, please email programme@ebworldcongress.org.

Please note: The Congress programme is subject to change.

Programme overview

08:30 | WELCOME
Chairs: Jemima Mellerio & Jouni Uitto
Update - EB-CLINET
Sophie Kitzmüller

Clinical challenges of EB skin - inside and out
Anna Martinez

Advances in diagnostics/phenotyping (CPG)
Cristina Has
09:00 | CURRENT DILEMMAS – FUNDING CHALLENGES (panel debate)
Chair: Francis Palisson
Individualised therapies
Leena Bruckner-Tuderman

Allocation of research funds
Johann Bauer

Funding for EB research
Al Lane

Costs and accessibility
Peter Marinkovich

Panel debate
How to increase research funding for EB; models of funding research; return on investment but ensuring we can develop management strategies for the wider group of patients
09:35 | UPDATE ON CLINICAL MANAGEMENT STRATEGIES
Chairs: Anna Martinez & Ignacia Fuentes
Superficial EBS/peeling skin syndromes
Eli Sprecher

Wound care (JEB)
Katie Plevey

Oesophageal management
Anna Bruckner

COFFEE BREAK

Gastrostomy
Joe Curry

ENT
David Albert

Oral health
Susanne Kramer

Eye
Michael Bartschi

Growth patterns
Antonia Reimer

Anaemia
Irene Corrales

Hand surgery – management strategies
Gill Smith

Surgery for SCC
Catina Bernardis

Podiatry
Tariq Khan

Q&A
12:25 | LUNCH
13:25 | CLINICAL & MANAGEMENT CASE HISTORIES
Chair: Eli Sprecher
CASE REPORT: SCC management and response
Martin Laimer

CASE REPORT: SCC management and response
Anna Bruckner

TBA
13:55 | QUALITY OF LIFE (PAIN & ITCH)
Chair: Marieke Bolling
Cannabinoids – pain and itch
Nic Schrader

Small fibre neuropathy
Margarita Calvo

Psychology of pain
Boris Zernikow

Pruritus in EB
Hagen Ott
14:55 | TEA BREAK
15:25 | SUPPORT MODELS
Chairs: Anja Diem & Mark Koh
Multidisciplinary team best practice (GSTT) Rare Disease Centre
Jemima Mellerio

Diagnostics and management in the Middle East
TBD

Managing EB in a resource limited setting
Ravi Hiremagalore

Telemedicine
Danielle Greenblatt

DEBRA adult EB and complex skin cancer clinic at Jefferson
TBD

Educational programmes
Christine Bodemer

International EB patient registry
TBD

Panel discussion
16:55 | CLOSE
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