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                                         DEBRA International Congress 2014

                                    Paris, France

DEBRA France 
was honoured and delighted to host the 2014 DEBRA International Congress held in Paris from September 19 - 21. The congress was held at the prestigious conference centre CAP 15 located close to the Eiffel Tower and the river Seine. CAP 15 provided an excellent venue for delegates attending the large number of sessions, presentations and forums.

The congress was chaired by Professor Fulvio Mavilio, (Scientific Director of Généthon), John Dart, (COO of DEBRA International), Rainer Riedl, (President of DEBRA International) and Guy Verdot (President DEBRA France). The high level of involvement from 280 delegates from over 35 nations meant the aims of congress were exceeded. Everyone involved with EB from around the world who attended had a superb opportunity to collaborate, understand progress and discuss EB research funded by DEBRA and other organisations. In addition, Clinical Practice Guidelines (CPGs), EB Without Borders (EBWB) – the mentoring programme for small or new DEBRA organisations – , EB-CLINET – the clinical network of EB centres and experts – , new member information exchange, fundraising, communications, brand building as well as nursing and care were all topics that received in-depth coverage.

Congress sessions benefited from simultaneous translation (English-French and French-English), and were fully audio and video taped (bilingual).

Feedback on the quality and the clarity of speakers was excellent. In addition, favourable reviews of the Nursing, Nutrition and Psychosocial forums were received as they allowed a large number of delegates to actively participate.

A visit to the Imagine Research Institute on Friday late afternoon generated great interest as the institute provides new ways to allow quick diagnosis of severe genetic disorders by using equipment capable of analysing gene and tissue samples. These capabilities are also particularly beneficial to research teams working on EB.

The organisation of congress was rated as excellent by delegates. DEBRA France was pleased by the large number of testimonials of thanks received. This tremendous result was achieved by a highly motivated and well organised DEBRA France team working in collaboration with the DEBRA International team.

Guy Verdot, Honorary President of DEBRA France


19th September
Christine BodemerGenodermatoses network
Alain HovnanianUpdate on the European GENEGRAFT project for RDEB
Frédéric RevahAbout Généthon and Bioprod
Johann BauerDiacerein - from basic science to orphan designation
Bothild KvernelandEB dental care
Alain HovnanianMolecular diagnosis and genetic counselling of EBS and DEB in France: 10 years of experience
Francis PalissonClinical Practice Guidelines for EB
Avril KennanDeveloping Clinical Practice Guidelines for EB: our journey to date
John DartProfessional training
20th September
Gabriela Pohla-GuboA global network for EB specialists
Marcel JonkmanNatural gene therapy, a healing source
Avril KennanEB research - the road to therapies
Christine BodemerNational French Protocol for Diagnosis and Care in EB (PNDS)
Henri MontaudiéSkin cancers and inherited EB - a complication to know
Jean-Philippe LacourJunctional Epidermolysis Bullosa: 27 years of genotyping in Nice, France
Christine ChiaveriniGreen Tea in DEB: treatment of hereditary DEB by oral epigallocatechin-3-gallate (Polyphenon E)
Robert RyanClinical evaluation of the safety and efficacy of SD-101 cream in patients with EB
Alain HovnanianCurrent and future strategic orientations for the treatment of RDEB
Philippe DepontDynamic orthoses: conservative treatment of the hand in RDEB
Cedric GaggioliTumor-stroma crosstalk in invasive carcinoma
Emmanuelle BourratRegister of EB and (Et) cancers: REBECA
Anna Kemble-WelchEBWB mentoring and support programme
Mark VarianMarketing and Communications
Judith GilsenanRelease Your Butterfly - a campaign for EB Awareness Week
21st September
Minerva QuijeraFundraising and Charity Shops in DEBRA Spain

Photo Gallery

  • Front of CAP15 business centre in Paris
  • Infoscreen in the reception area of the foyer, showing the CAP15 logo, an image of a child with a butterfly and the text "DEBRA Congress 2014"
  • Dark haired man, about 70 years of age, and a woman with short light hair, about 50 years of age
  • Elderly man with a microphone
  • 3 people (1 woman, 2 men) in front of a videowall with text, reading "DEBRA International Congress 2014, Paris"
  • Male speaker in front of the microphone
  • Participants (audience) in the conference room
  • 3 female Japanese delegates in the lobby of the conference centre, presenting their name tags
  • Congress participants in the lobby, in a coffee break
  • DEBRA information stand in the foyer, staffed by DEBRA France delegated and equipped with folders and posters
  • 2 DEBRA delegates, 1 young lady and one elderly gentleman
  • 3 young ladies in blue jackets with DEBRA branding
  • 3 delegates (2 female, 1 male) in front of the main entrance of the congress centre
  • Group of people on a guided tour in a building
  • Close-up of a computer screen in a lab, showing different graphs (Type VII collagen immunostaining)
  • 2 male delegates in front of a video screen reading "DEBRA International congress 2014"
  • 4 elderly men in the conference centre lobby, in front of a video screen reading "DEBRA International congress 2014, Paris"
  • Group of about 30 people in a meeting room
  • 3 DEBRA delegates (1 woman, 2 men) in a meeting room
  • Woman with "#stop EB" written on the palms of her hands, and a butterfly painted across her face, in a restaurant setting
  • Group picture of 11 people in a meeting room
  • 2 female participants in the conference room
  • 3 participants in the conference room (2 female, 1 male)