Donation Account: IBAN AT656000000510045254, BIC BAWAATWW, EB-CLINET, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

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3rd Conference of EB-CLINET - Clinical Network of EB Centres and Experts

24-25 September 2015
London, UK

For the first time, both the EB-CLINET and DEBRA International conferences were held at the same venue. They have been run as two conferences with one shared day of the programme.

Group picture of all the delegates in the conference room, waving their hands.
Delegates of the EB-CLINET and DEBRA International conferences 2015, in the Royal Society of Medicine

DEBRA UK was proud to host two conferences for clinicians and professionals working with EB, the 2015 EB-CLINET and DEBRA International conferences, in London from 24 – 26 September 2015.

The conferences were opened by Anna Martinez (Dermatology Consultant, Great Ormond Street Hospital) and Jemima Mellerio (Dermatology Consultant, Guy's and St. Thomas' Hospital) for EB-CLINET and Ben Merrett (CEO, DEBRA UK), Rainer Riedl (President of DEBRA International) and David Spence (Chair of Trustees, DEBRA UK) for DEBRA International.

For the first time, the EB-CLINET and DEBRA International conferences were held at the same time and shared one day of the programme. With over 320 delegates (more than ever before) from over 35 countries attending one or more days of the conferences, this exceptional event exceeded expectations. The DEBRA International Conference was the largest ever held and over twice the number of delegates attended EB-CLINET than in previous years, providing an unparalleled opportunity to share expertise and make connections with leading clinicians and DEBRA organisations from around the world.

The programme, covering a wide range of clinical and research projects and DEBRA supported initiatives, included first class presenters from around the world.

Multi-disciplinary care, the development of best practice guidelines, initiatives undertaken to develop professional community support for people living and working with EB, psychosocial support, developments in fundraising and the importance of increased information and knowledge sharing were common themes across both conferences. Delegates also had the opportunity to enjoy three evenings of social events, including wine tasting and a boat trip on the river Thames.

A number of people living with EB shared their experiences in a moving and informative session. Each individual's experience of living with the condition was unique, but all emphasised the value of DEBRA groups in supporting individuals and families living with EB and providing vital opportunities for people living with this rare condition to connect with each other and share experiences. EB-CLINET and the specialist EB clinical teams were also widely praised for their valued contribution to promoting clinical and research expertise in EB.

The Royal Society of Medicine provided a wonderful venue with great catering and space for lectures and networking. Numerous positive comments were also received on the quality of the presentations, the high level of participation and stimulating debate in discussion sessions and forums.

The enthusiasm, passion and commitment to working together locally and internationally across specialities to support people living with EB was evident across both conferences. On behalf of DEBRA International, EB-CLINET and DEBRA UK, I would like to thank everyone who attended and helped to make them such a success.

Warmest thanks go to our sponsors and supporters who made it possible to host these very valuable conferences, CliniMed, PolyMem, CliniSupplies, Mölnlycke Health Care, APA Parafricta, Crawford Healthcare Ltd, H&R Healthcare, Bullen Healthcare, Keraplast Research, Dermatonics Ltd and Reed Medical Ltd, as well as our other exhibitors – the DEBRA Community Support and Membership teams, Solihull Hospital, Great Ormond Street Hospital, Guy's and St. Thomas' Hospital, Birmingham Children's Hospital, specialist EB dietitians and DEBRA UK Retail.

And finally, thank you to all the delegates, many of whom travelled many miles and gave their personal time to participate in the conferences. The continued commitment and passion from many professional disciplines from around the world to enhance the quality of life for people living with EB was truly inspirational and a great motivation to keep on fighting the challenges presented by EB. Thank you all!

Claire Mather, Director of Healthcare, Membership and EB Community Support, DEBRA UK

Presentations

Following is a selection of presentations held at the conference that can be downloaded here.

DaySpeakerPresentation
Sep 24thJemima Mellerio
Anna Martinez
Welcome and Introduction EB-CLINET Conference
Gabriela Pohla-GuboStatus of EB-CLINET/European Reference Networks for Rare Diseases
Helmut HintnerEB Registries - A global minimal data set registry
Finola Sheehan
Lesley Foster
Workshop 1 - The role of the EB Clinical Nurse Specialist in the outreach model of care
Celia MossWorkshop 2 - UK Epidermolysis Bullosa Data system
Kate MossClinical Cases - Masquerade
Sep 25thBen Merrett
David Spence Rainer Riedl
Welcome and Introduction DEBRA International Annual Congress
Clare RobinsonUpdate on therapy development
Jakub TolarBone Marrow Transplantation for Epidermolysis Bullosa
Avril KennanDemystifying clinical practice guidelines
Kenneth GoldschneiderClinical Practice Guideline: Pain Management
Kate MossExperiencing life to the full: obstacles and achievements – panel of people with EB 
Jane Clapham
Caroline Mackenzie
Nursing forum: Single case study Avascular Necrosis (AVN)
Kate MossPsychosocial forum: Afterlife
Sep 26thClaire MatherCommunity support services
Maureen NicksonCharity Retail
Judith Gilsenan
Mike Bartlett
Marketing Advisory Group (MAG) - Sharing Ideas and experience
Ana María PonceFundraising strategies DEBRA Spain

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Picture gallery

(click to enlarge)

  • Executive committee of DEBRA International in front of the Royal Society of Medicine building in London
  • Sign reading "2015 EB-CLINET and DEBRA International conferences"
  • 2 young ladies, with one arm on each other's shoulder and looking into the camera
  • 1 man and two women left and right of him, the man facing the camera, the women talking to each other.
  • Powerpoint slide with a welcome note to the 3rd EB-CLINET conference
  • Dark-haired woman, part of a purple balloon in the background
  • Male speaker behind the standing desk, with microphone. Part of a banner to be seen in the background, reading "Supporting Epidermolysis bullosa research"
  • Male speaker behind the standing desk, with microphone. Behind him a couple of turquoise and purple balloons.
  • Female, short-haired speaker behind the standing desk, with microphone. Behind her are parts of a banner to be seen, reading "Supporting Epidermolysis Bullosa research"
  • Group of conference attendants in the big auditorium, listening with full concentration. In the focus a grey-haired man with glasses.
  • Auditorium facing the front, where the screen shows a slide with the headline "Clinical practice guidelines"
  • Female speaker with lengthy dark hair, behind the standing desk, with microphone. Behind her are parts of a banner to be seen, reading "Supporting Epidermolysis Bullosa research", as well as a couple of purple and turquoise balloons
  • 5 speakers (2 male, 3 female) on the podium, for the discussion
  • Dark-haired man with microphone, behind him are parts of a banner to be seen, reading "Supporting Epidermolysis Bullosa research"
  • Audience in the big auditorium
  • Female, short-haired speaker with microphone.
  • Group of Asian delegates in the entrance hall
  • Young lady with EB, sitting in the auditorium and holding her hand to her chin.
  • View of the light atrium with glass roof - where coffee break takes place. The focus is on a water tank on a table, with strawberry pieces in the water.
  • People sitting in the auditorium, focus on a dark-haired woman listening fully concentrated.
  • 3 people (2 men and a woman) sitting in the auditorium, the 2 men looking into the camera. the closer man has EB.
  • Man behind the standing desk, with microphone
  • Audience in the big auditorium, focus on a man fully concentrated
  • Man with microphone
  • Group of speakers on the podium, sitting behind a desk. Behind them, standing, a group of DEBRA Uk staff in purple T-shirts reading "DEBRA divas"
  • Man with EB hugging a lady behind the speaker's desk; next to them another man, looking at them confidently
  • Group of people in a conference room
  • Beautifully decorated muffins with icing and little butterfly shapes

With grateful thanks to our Premium Plus and Premium sponsors:

Premium sponsor logos: CliniMed, PolyMem, APA Parafricta, Mölnlycke Health Care

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