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                                      DEBRA International Congress 2013

                                       Rome, Italy


DEBRA Italy 
was delighted to host the annual DEBRA International congress, held 20-22 September, 2013 in Rome. The venue for the conference was the brand new Auditorium San Paolo of the Bambino Gesù Children's Hospital.

This highly anticipated event was co-chaired by DEBRA Italy President Claudio Notarantonio and DEBRA International President Rainer Riedl. Dr. Giuseppe Profiti, President of the Bambino Gesù Hospital welcomed the international guests to the event.

Patients of all ages (children, adolescents and adults), families, researchers, and health professionals (physicians, surgeons, nutritionists, etc.) spoke about how to improve the quality of life for people with Epidermolysis Bullosa, how to help and support them and their families and what currently are the best treatments (medical and surgical, nutritional, physiotherapy) to them.

During the five thematic sessions, that covered all ages (from neonates to adults), both the testimonies of patients and parents as well as the expertise of researchers and medical professionals provided a comprehensive approach and stimulated constructive dialogue.

The event was attended by DEBRA delegates, people with EB, and families coming from countries from all around the globe.

The congress schedule highlighted presentations from 40 international speakers and included:
· The newborn and their family on September 20
· The child and their family, and the teenager and adult on September 21
· Clinical and research updates day on September 22
· Workshops and interactive break-out sessions on September 21 and 22

Families and delegates have had the unique experience of being welcomed and blessed by His Holiness the Pope Francis I in Saint Peter's Cathedral on the morning of the 21 September, and to enjoy a private visit of the Vatican Museum, including the view of Michelangelo's Sistine Chapel and Raffaello's rooms masterpieces in the evening.


Presentations

Speaker

Presentation

20th SeptemberEB today
Christine BodemerWhat's new in the clinic?
Giovanna ZambrunoWhat's new in research?
Andrea ViciniEthical challenges and resources
The newborn and their family
Patients' testimonialsTestimony of Clarissa and Gaetano's parents
Annalia Ciasulli & Andrea DiociaiutiTaking care of the newborn
Patrizia AmadioTherapeutic patient education
21st SeptemberThe child and their family
Patients' testimonialsTestimony of Riccardo's parents
Testimony of Tommaso
Cristiana De RanieriEB and the family
Antonio CuzzocreaHand surgery: the experience of an Italian centre
The teenager and the adult 
Patients' testimonialsTestimony of Angela and Anna's adolescence
Testimony of Valeria
Elisabetta AndreoliGrowing up with EB - Crescere con l'EB (Italian)
Alberto VillaniNutritional aspects in childhood
Christine BodemerGastronomy
Tamara Caldaro & Raffaella De AngelisOesophageal dilation
Giuseppina AnnicchiaricoGluten sensitivity - Sensibilità al glutine (Italian)
22nd September Clinical and research update 
Raffaella De AngelisThe relationship with the patient association and the region
Sophie GuezAn Italian model of interdisciplinary approach
Florian PrinzOccupational therapy in EB
Gianluca TadiniPlatelet: rich plasma for wound treatment
Marcia Séllos MouraRDEB therapeutic developments: update on recombinant collagen VII
Evanina Morcillo MakowPrioritsation of therapy uncertainties in Dystrophic EB: where should research direct to?
John DartEBCare.org patient-reported registry
Gabriela Pohla-GuboEB-CLINET - linking clinical expertise in EB
Rosie GowranPrioritising support services for people with EB



Photo Gallery

  • Front of Bambino Gesù Hospital in Rome
  • President of DEBRA International, Rainer Riedl, and president of DEBRA Italy, Claudio  Notarantonio
  • Congress participants in the conference room
  • Woman with EB holding a presentation and showing a picture of herself in a wheelchair at the countryside
  • Young woman with EB giving a presentation
  • Group picture: Delegates from Shire HGT and DEBRA International in the lobby
  • 2 women on the podium
  • Powerpoint slide: "What has DI achieved?" and representatives of DEBRA International on the podium
  • Group picture: DEBRA International executive committee
  • 4 congress participants bending over a children's book in the conference room
  • Group picture: DEBRA delegates and DEBRA International representives in front of the podium in the conference room
  • John Dart cutting a cake
  • Close-up of a cake with colourful decoration: Logo of Bambino Gesù Hospital, DEBRA International congress logo and DEBRA logo
  • close-up of 3 female congress participants
  • Close-up of 2 congress participants
  • Group picture: 6 women lined up in the hospital yard, holding up each other's hands
  • Florian Prinz (occupational therapist) giving a presentation
  • Discussion between Dr. Francis Palisson and John Dart in the audience area of the conference room
  • Dr. Gabriela Pohla-Gubo giving a presentation, in the background powerpoint slide about "EB-CLINET"
  • Dr. Marcia Sellos-Moura (Shire HGT) giving a presentation
  • 4 national and DEBRA International delegates in the lobby area of the Bambino Gesù hospital
  • Woman presenting two adapted dolls with blisters and wounds for specialised EB nursing training
  • Close-up of 2 female congress participants



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