Thursday, 23 January 2020

The final day of the Congress, open to all ticketholders – Industry, Standard, and EB Community – summarises the discussions from the earlier days of the Congress, as well as provides the opportunity for members of the EB Community to talk directly to panel experts about aspects of the condition.

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

Please note: The Congress programme is subject to change.

Programme overview

09:00 | WELCOME
Chairs: Jemima Mellerio & Jouni Uitto
09:05 | A GLOBAL APPROACH TO EB
Chair: Brett Kopelan
DEBRAs around the world – a 40 year history
Evanina Morcillo Makow

DEBRA International
Brett Kopelan/Jimmy Fearon

Co-ordination and collaboration in EB
TBD
09:40 | UPDATES IN EB RESEARCH
Chair: Jouni Uitto
Research update (cell)
Su Lwin

Research update (gene and protein)
Peter Marinkovich

Cancer & cancer therapeutics
Jemima Mellerio

Advances in clinical management strategies
Anna Martinez

Biotech research
Brett Kopelan

Q&A
10:55 | COFFEE BREAK
11:40 | PATIENTS IN CLINICAL TRIALS (panel debate)
Chair: Eli Sprecher
Clinical trials explained
Gabriela Petrof

Patient and parent perspectives
Lena Riedl (with Rainer Riedl)

Challenges of clinical trial design
Martin Laimer

Using registries and big data
TBD

Panel debate
Clinical trial challenges and dilemmas from all points of view
12:20 | LIVING WITH EB
Chair: Anja Diem
Quality of life – clinician and patient working together
TBD

Family dynamics – living with EB across the ages
Parent with child

How can patients & parents become active in the community
Rainer Riedl

Education and family support
Sam Geuens

Discussion
13:15 | LUNCH
14:30 | UPDATES IN EB CLINICAL CARE
Chairs: Jemima Mellerio & Agnes Schwieger-Briel
Clinical practice guidelines/patient versions/EB infographics
Kattya Mayre-Chilton

Impacting pain and itch
Francis Palisson

The importance of exercise in EB
Amy Price

Occupational therapy in EB
Jennifer Chan

Psychosocial guidelines
Petra de Graf

EB and pregnancy
Danielle Greenblatt

Nutrition
Lynne Hubbard

Oral health
Susanne Kramer
15:55 | TEA BREAK
16:40 | EB COMMUNITY OPEN FORM
Facilitator: Jemima Mellerio
Topics will vary based on user questions
Panel members – Jane Clapham, TBD
17:30 | CLOSE
X
//]]>