Day 1: Friday, 24 November 2017


Conference Opening - Welcome and Introductions

DEBRA NZ & Congress committee, DEBRA International Vice President & Exec, Wellington Mayor Justin Lester

A voice of people living with EB

Humphrey Hanley, DEBRA NZ


Presentations on EB Research Projects

Overview of Research Projects & Clinical Care in Japan

Dr Satoru Shinkuma, MD. PhD. Department of Dermatology, Niigata University, Japan


Presentations on EB Clinical Practice and Guidelines

Development & Overview of Clinical Practice Guidelines for EB

Kattya Mayre-Chilton, PhD RD,Clinical Practice Guideline Coordinator, DEBRA International

Clinical Practice Guidelines (CPG) for Skin and Wound care in EB

Jane Clapham & Caroline Mackenzie, UK EB Nurse Specialists

Epidermolysis Bullosa - Dental Considerations

Dr James Lucas, Specialist Paediatric Dentist, Deputy Director of the Dental Department, The Royal Children's Hospital, Melbourne and Clinical Professor, University of Melbourne, Australia


Cannabis in EB - Risks and Potential

Dr Anja Diem, EB Specialist MD EB House Austria, University Hospital of Dermatology, Salzburg, Austria

EB Clinical Practice Guidelines in Podiatry

Dr Tariq Khan, Consultant Podiatrist, Great Ormond Street Hospital for Sick Children UK, and Dermatology Departments St George Hospital Sydney and Royal Melbourne Children's Hospital

Clinical Practice Guidelines Management of Squamous Cell Carcinomas in EB

Dr Susan Robertson, Dermatologist, The Royal Children's Hospital, Melbourne, Australia

Presentation of Abstracts

Long lasting epithelization after cultured epidermal autograft with revertant mosaicism in recessive dystrophic epidermolysis bullosa

Wakana Matsumura MD, Department of Dermatology, Hokkaido University Graduate School of Medicine, Sapporo

Retrospective Longitudinal Study of Osteoporosis in Adults with RDEB

Lynne Hubbard RD BSc MPhil, Specialist Dietitian in EB, St Thomas' Hospital, London, UK

CPG Nutrition-Constipation

Rosie Jones, UK

Surgical wound and scar healing in EB

Dr Adam Harris, Dept of Dermatology, St George Hospital, & University of NSW, Sydney, Australia


Day 2: Saturday, 25 November 2017


The experiences of EB clinical care in different countries - what we do best and what we still need to develop

Epidermolysis Bullosa in New Zealand

Dr Diana Purvis, Dermatologist and Paediatrician, Consultant Paediatric Dermatologist, Department of Paediatrics, Starship Children's Health, Auckland City Hospital, NZ

EB House Austria

Dr Anja Diem, EB Specialist MD, EB House Austria, University Hospital of Dermatology, Salzburg, Austria

A case report of bone marrow transplantation treatment for a RDEB patient in China

Dr Zhe Zu, Department of Dermatology, Beijing Children's Hospital, Capital Medical University, Beijing, China

Q & A

Prof Dedee Murrell, Moderator


The experiences of DEBRAs in different countries - what we do best and what we still need to develop


Mr Yingchun Zhou, President of DEBRA China

DEBRA Croatia

Mrs Vlasta Zmazek, President of DEBRA Croatia, President of the Croatian Alliance for Rare Diseases, and member of EURORDIS Board of Directors


Ben Merrett, CEO DEBRA UK

DEBRA Australia: Sustainable Growth - Balancing Ideas and Funds

Jenny Marty, Chair of DEBRA Australia


DEBRA Chile - DEBRA Shop Project

Loreto Moore, Director, DEBRA Chile

DEBRA Russia - international collaborative fundraising projects: "The Untouchables"

Tatyana Volgunova, Project Manager, DEBRA Russia

The Global Butterfly Run 2017: Russia, Chile and Singapore

Oxana Romanchuk, (DEBRA Russia), Carmen Justiniano (DEBRA Chile), Ritu Jain (DEBRA Singapore)

DEBRA New Zealand - Tribulations and innovations

Martin Hanley


The experiences of people living with EB

DEBRA International member groups

Lea Prujean, DEBRA NZ & International Coordinator, EB Without Borders

DEBRA Canada

Erin Hoyos, Project Coordinator & Administrative Officer, DEBRA Canada

DEBRA Ireland

Jimmy Fearon, CEO, DEBRA Ireland


DERBRA Argentina

Ariel Vaisman

DEBRA Singapore

Ritu Jain, President, DEBRA Singapore


Day 3: Saturday, 26 November 2017


Improving care and treatment for people with EB around the world

Home Care Program Improves the Life Quality of Patients with Epidermolysis Bullosa: a Taiwanese Perspective

Claudia Yun-Tzu Chang, Taipei First Girls High School; DEBRA Taiwan & Dr Hao-Hueng Chang, National Taiwan University Hospital; DEBRA Taiwan

Challenges in diagnosis and management of Epidermolysis Bullosa in developing countries

Dr Kin Fon Leong, Dermatologist, Kuala Lumpur, Malaysia


The role of EB Clinet, and potential for developing an international EB Medical Advisory team

Dr Anja Diem, EB House Austria

EB Without Borders, panel discussion

Lea Prujean, Ritu Jain, Vlasta Zmazek, Loreto Moore, Ingrid Jageneau, Anna Kemble Welch, Zlatko Kopecki, Sharon Cassidy

Developing care guidelines for low resource situations, panel discussion

Dr Anja Diem, Dr Francis Palisson, Sharon Cassidy, Yingchun Zhou, Lea Prujean, Sumita Poopalalingam, Anna Kemble Welch