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 updated monthly and the current version is, therefore, 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 - co-ordination and collaboration in EB
Brett Kopelan/Jimmy Fearon

Questions
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 commercial development
Brett Kopelan

Questions
10:55 | COFFEE BREAK
11:35 | CURRENT DILEMMAS – A CONGRESS DEBATE (Patients in clinical trials)
Chair: Jouni Uitto
Clinical trials explained
Gabriela Petrof

Patient and parent perspectives
TBA

Challenges of clinical trial design
Christine Prodinger

Using registries and big data
Godfrey Fletcher

Open debate – clinical trial challenges and dilemmas from all points of view
12:15 | LIVING WITH EB
Chairs: Anna Martinez & Anja Diem
Quality of life – clinician and patient working together
Natasha Harper

Family and community
How can patients & parents become active in the community, family dynamics and living with EB across the ages
TBA

Education and family support/care & social services
Sam Geuens

Discussion

Chair invites people to submit written questions during lunch and tea breaks for the open forum at the end of the day
13:15 | LUNCH
14:30 | UPDATES IN EB CLINICAL CARE
Chairs: Jemima Mellerio & Agnes Schwieger-Briel
Clinical practice guidelines, patient versions and EB infographics updates
Kattya Mayre-Chilton

The importance of exercise in EB
Amy Price

Occupational therapy in EB
Jennifer Chan

Psychosocial guidelines
Petra de Graaf

EB and pregnancy
Danielle Greenblatt

Nutrition
Lynne Hubbard

Oral health
Susanne Kramer

Questions
15:55 | TEA BREAK
16:40 | EB COMMUNITY OPEN FORM (Ask the panel)
Facilitator: Jemima Mellerio
Questions invited on:

  • Itch and pain management
  • Bandaging
  • Post hand surgery
  • Approaches to different treatments for wounds on the face, neck, and ears
  • Psychosocial support for patients, carers and family
  • Gynaecology
  • Pregnancy and childbirth
  • Eye care
  • Treating wounds in tricky areas
  • Nutrition
  • Oral health
  • Exercise

Panel members:
Jane Clapham, Lynne Hubbard, Mark Popenhagen, Rachel Box, Susanne Kramer, Susana Morley
17:25 | CLOSE
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