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 updated monthly and the current version is, therefore, subject to change.Programme overview
08:30 | WELCOME
Chairs: Jemima Mellerio & Jouni Uitto
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 Questions
Sophie Kitzmüller Clinical challenges of EB skin - inside and out
Anna Martinez Advances in diagnostics/phenotyping (CPG)
Cristina Has Questions
08:55 | CURRENT DILEMMAS – A CONGRESS DEBATE (Funding challenges)
Chair: Al Lane
Chair: Al Lane
Individualised therapies
Leena Bruckner-Tuderman Allocation of research funds
Johann Bauer Funding for EB research
Al Lane Costs and accessibility
Peter Marinkovich Open debate – how to increase research funding for EB; models of funding research; return on investment, ensuring we can develop management strategies for the wider group of patients/all types of EB
Leena Bruckner-Tuderman Allocation of research funds
Johann Bauer Funding for EB research
Al Lane Costs and accessibility
Peter Marinkovich Open debate – how to increase research funding for EB; models of funding research; return on investment, ensuring we can develop management strategies for the wider group of patients/all types of EB
09:35 | UPDATE ON CLINICAL MANAGEMENT STRATEGIES (includes coffee break)
Chairs: Anna Martinez & Ignacia Fuentes
Chairs: Anna Martinez & Ignacia Fuentes
Superficial EBS/peeling skin syndromes
Eli Sprecher Wound care (JEB)
Katie Plevey Oesophageal management
Anna Bruckner Gastrostomy
Joe Curry ENT
David Albert Oral health
Susanne Kramer Questions COFFEE BREAK Eye
Michael Bartschi Growth patterns
Antonia Reimer Anaemia
Irene Lara-Corrales Hand surgery – management strategies
Gill Smith Surgery for SCC
Catina Bernardis Podiatry
Tariq Khan Questions
Eli Sprecher Wound care (JEB)
Katie Plevey Oesophageal management
Anna Bruckner Gastrostomy
Joe Curry ENT
David Albert Oral health
Susanne Kramer Questions COFFEE BREAK Eye
Michael Bartschi Growth patterns
Antonia Reimer Anaemia
Irene Lara-Corrales Hand surgery – management strategies
Gill Smith Surgery for SCC
Catina Bernardis Podiatry
Tariq Khan Questions
12:25 | LUNCH
13:25 | CLINICAL & MANAGEMENT CASE HISTORIES
Chairs: Eli Sprecher & Hana Buckova
Chairs: Eli Sprecher & Hana Buckova
CASE REPORT: SCC management and response
Anna Bruckner CASE REPORT: SCC management and response
Pavel Rotschein
Anna Bruckner CASE REPORT: SCC management and response
Pavel Rotschein
13:55 | QUALITY OF LIFE (PAIN & ITCH)
Chair: Marieke Bolling
Chair: Marieke Bolling
Cannabinoids – pain and itch
Nic Schrader Small fibre neuropathy
Margarita Calvo Psychology of pain
Boris Zernikow Pruritus in EB
Hagen Ott Questions
Nic Schrader Small fibre neuropathy
Margarita Calvo Psychology of pain
Boris Zernikow Pruritus in EB
Hagen Ott Questions
14:50 | TEA BREAK
15:20 | SUPPORT MODELS
Chairs: Anna Martinez & Anja Diem
Chairs: Anna Martinez & Anja Diem
Multidisciplinary team best practice (GSTT) Rare Disease Centre
Jemima Mellerio Managing EB in a resource limited setting
Ravi Hiremagalore Telemedicine
Danielle Greenblatt EB-associated SCC: The Jefferson Adult EB and Complex Skin Cancer Clinic
Bahar Dasgeb Educational programmes
Christine Bodemer International EB patient registry
Godfrey Fletcher Innovation in patient data platforms
Michael Hund Panel discussion
Jemima Mellerio Managing EB in a resource limited setting
Ravi Hiremagalore Telemedicine
Danielle Greenblatt EB-associated SCC: The Jefferson Adult EB and Complex Skin Cancer Clinic
Bahar Dasgeb Educational programmes
Christine Bodemer International EB patient registry
Godfrey Fletcher Innovation in patient data platforms
Michael Hund Panel discussion
16:45 | STRATEGIES FOR CARE – STATUS UPDATE
Chairs: Anna Martinez & Anja Diem
Chairs: Anna Martinez & Anja Diem
A potential new therapeutic approach targeting wound infection – disrupting bacterial communication
Erik Gerner Development of two topical approaches to wound healing in EB. An update on progress with Oleogel-S10 and AP 103
Mark Sumeray The impact of antimicrobial resistance on topical treatment selection
Gilles Brackman The role of Hydrofiber dressings in EB wound management
Rachel Torkington-Stokes Questions
Erik Gerner Development of two topical approaches to wound healing in EB. An update on progress with Oleogel-S10 and AP 103
Mark Sumeray The impact of antimicrobial resistance on topical treatment selection
Gilles Brackman The role of Hydrofiber dressings in EB wound management
Rachel Torkington-Stokes Questions
18:15 | CLOSE