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                 DEBRA International Congress 2016

                                  Zagreb, Croatia

The 2016 DEBRA International Congress hosted by DEBRA Croatia took place from 22 - 25 September in the beautiful city of Zagreb. The event took place on the 17th floor of the Hotel Westin, which offered breath-taking panoramic views of the city.

Over 200 participants from 33 countries attended the event including delegates from 28 DEBRA groups; researchers; clinicians, nurses, and dietitians; patients; families; and industry supporters. The conference was officially opened with speeches of welcome from representatives from the Mayor of Zagreb, The Ministry of Health, and DEBRA Croatia.

Cinzia Pilo, President of DEBRA International 2015-2016 and Dr. Francis Palisson of DEBRA Chile presided over the main event, which involved a range of presentations from research advances, updates on DEBRA International work groups such as EB Without Borders and Clinical Practice Guidelines to EB patient experiences. Additional discussion groups were organised for medical professionals and patients alike.

The conference also marked the 20th anniversary of DEBRA Croatia. A touching documentary film premiered at the Gala dinner detailed the journeys of DEBRA Croatia and DEBRA Slovenia paying tributes to all those who helped in their creation. Thanks and congratulations go to DEBRA Croatia member, Marko Petrovic whose daughter Nora has EB for his invaluable help in creating this film

The conference also saw many changes to the structure of DEBRA International. The 
Executive Committee is now made up of representatives from 12 DEBRA groups with Mike Jaega from DEBRA UK as President of DEBRA International. DEBRA International has also brought on a Business Manager, Liv Mullins to be responsible for the daily operations of DEBRA International.

Huge congratulations go out to Vlasta Zmazek and all of the DEBRA Croatia team for organising such a wonderful and successful event.


Presentations

Speaker

Presentation

23rd September
Cinzia PiloThe voice of people living with EB
Gabriela Pohla-GuboEB-CLINET – EB support around the world
Christine BodemerERN – Easier access to diagnosis
Clare RobinsonOverview of DEBRA International Research projects
Peter MarinkovichGene therapy for EB - results of phase one clinical trial
Marcel JonkmanThe prospects of gene editing for EB
John MarshallCancer in RDEB – is researching getting us closer to a treatment?
Jemima MellerioPEBLES – Natural history of RDEB
Suzanna EspositoRole of inflammation in EB: implications for new therapeutic approaches
Johann BauerDiacerein: the way to an approved drug for EB
Suzanna EspositoAmicus – update on Essence Study – SD101 Clinical Trial
Slobodna Murat SušićQuality of life of EB patients
Anja DiemLow-resource countries – are we willing to meet the challenge?
Marina Milić BabićExperiences of parents of children with rare diseases (EB and Williams syndrome) - challenges and recommendations
Nataša BijelićSocial services
Velijko Đorđević & Marijana BrašCommunication skills in work with patients who suffer from EB and members of their family
24th September
Avril Kennan & Katty Mayre-ChiltonUpdate on Clinical Practice Guidelines
Cristina HasCPG - Laboratory EB guideline
DEBRA Russia, DEBRA BiH & EBWBExperiences, achievements and challenges from different countries
DEBRA RussiaThe Butterfly Run
Ben MerrettFundraising ideas/collaborations



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