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                    DEBRA International Congress 2018

                                  Zermatt, Switzerland

The 2018 DEBRA International Congress, hosted by DEBRA Switzerlandtook place from 07 to 09 September in the picturesque town of Zermatt nestled in the Swiss mountains in the shadow of the Matterhorn.

Over 215 delegates from 33 countries representing 82 organisations attended the event making it one of the largest DEBRA International congresses since its inauguration in 1992. Delegates included representatives from 29 DEBRA and EB-support groups as well as researchers, healthcare professionals, patients and families, and industry supporters.

The programme covered a variety of topics, including research activities and the latest advances in gene and cell therapies, the different aspects of clinical care from management of itch and oral health to the use of hydrotherapy and therapeutic contact lenses, and the experiences of EB families and healthcare professionals in different areas of the world. Additional forums were organised for healthcare professionals, DEBRA representatives, and patients and families alike.

The Congress also marked the 20th anniversary of DEBRA Switzerland with a celebratory Gala dinner and concert from long-time DEBRA Switzerland supporter, singer-songwriter Luca Hänni who had written a special song a song
dedicated to all butterfly children worldwide.

Huge congratulations go out to Tanja Reusser and all of the DEBRA Switzerland and Congress teams for organising such a wonderful and successful event.


Presentations

Speaker

Presentation

7 September
Tanja ReusserWelcome
John McGrathResearch activities
Lara CutlerA new gene delivery system
Peter MarinkovichGene therapy for recessive dystrophic Epidermolysis bullosa
Agnes Schwieger-BrielNews from EBS KLHL24
Norbet TeigReplacement of the whole skin with genetically modified epidermal stem cells in a boy with junctional epidermolysis bullosa
Michael FroschWe can influence the pain! – pain treatment program for children (and their parents) with Epidermolysis bullosa
Elena PopeThe validation of iScorEB
Hagen OttItching for insight: Management of pruritus in EB
Anja DiemHerbal medicine - hope, opportunities and limitations
Antonia ReimerGrowth in EB – what makes EB children big and strong?
Jemima MellerioChallenging wounds in EB
Rachel BoxPatient-driven treatment of hand contractures in epidermolysis bullosa
Leena Bruckner-TudermanLosartan treatment of recessive dystrophic EB: Where do we stand?
Klaus NeuhausStruggling for oral health
Judith Kristin Asche, Kattya Mayre-ChiltonCPG project - an overview
Irene Lara CorralesAnaemia in EB
Cristina HasKindler syndrome, the fourth type of EB: Natural history and the propensity for skin cancer
Michelle WoodThe use of hydrotherapy for children with Epidermolysis bullosa
Rachel BoxGLOVE 1 Generation and evaluation of hand therapy devices for Epidermolysis bullosa – Findings from the dressing glove proof of concept study
Sandra KearnyIdentifying the optimum role and function of an Epidermolysis bullosa outreach nurse
Tatyana Volgunova, Natalia MarichevaRehabilitation of butterfly children in a health resort

8 September
Janet Boylan, Mark Sumeray‘EASE’ Phase 3 Pivotal Trial Update
Annette DowneImplementation plan for the development of telemedicine (TM) in the adult Epidermolysis bullosa (EB) service in London
Ravi HiremagaloreComprehensive care in Epidermolysis bullosa - an experience from resource poor settings
Zlatko KopeckiSystemically administered flightless I neutralising antibodies home to skin wounds leading to improved healing and survival of recessive dystrophic Epidermolysis bullosa mice
Rosaria De Lorenzo, Carolina GouveiaEB multidisciplinary care in Switzerland & experiences of EB Nurses - bridging caretakers
Michael BärtschiUse of therapeutic contact lenses for the treatment of recurrent corneal erosions due to Epidermolysis bullosa dystrophica

EB contact lens fitting suggestion by Dr Bärtschi
Mark KohMultidisciplinary care in Singapore and South Asia
Marion Küppers-Chinnow, Friederike UferInpatient rehabilitation for children with EB and their families
Vlasta ZmazekRare Recourcenet-Debra Croatia
Francis PalissonEB in Chile
Jeanine Frantz, Louisa HuberThe role of DEBRA and regional associations in Brazil, a continental country
Julia CieplikThe voice of people with EB
Michelle ZimmermannAbove pain - on the wings of a butterfly
Kate MartinInternational EB psychosocial guidelines: support for the individual, family and professionals
Nicole WackernagelChances and limitations of hypnosis
- Pain management with hypnosis
- Pain management with self-hypnosis
Lea PrujeanEB without borders

9 September
Michaela O‘BrienIn Crystal Skin
Jack van ZijpThe worst disease you’ve ever heard of



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