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February 2013

The latest news from DEBRA International

February 2013

The News From the 2012 EB Research Conference

Screenshot of a conference video, showing conference chair Prof. Jouni Uitto
Click here to watch a video on the conference

The value of DEBRA International is never clearer than at the EB research conference, which it organises every three years. The 2012 conference was held in November in Marbella, Spain, and brought together almost 100 of the world’s top EB researchers, and a number of patient representatives. The value of bringing together researchers to share, challenge each other and plan for the future cannot be overstated. It was heartening to see the progress in the research since the previous conference and everyone who attended left with a renewed sense of purpose and urgency.

The conference was organised by the DEBRA International staff, working closely with the conference host, DEBRA Spain. All involved should be commended on an incredibly well-run meeting.

Large Pharmaceutical Spotlight on EB

Photo of Mark De Souza of Lotus Tissue Repair speaking at the first EB-CLINET Conference
Mark De Souza of Lotus Tissue Repair

In big news for the EB community, it was announced on Tuesday that the global pharmaceutical company, Shire, has signed an agreement to acquire Lotus Tissue Repair, the biotech company currently developing a protein replacement therapy for dystrophic EB (DEB).


Shire intends to progress the development of this therapy, which has the potential to be the first of its kind for EB. It involves the delivery of recombinant (man-made) collagen 7 protein (rC7) to patients who are missing or have dysfunctional collagen 7. The therapy approach originally emerged from the research lab of Dr. David Woodley and Dr. Mei Chen, University of Southern California. Currently, driven by Lotus, it is at the 'late pre-clinical' stage – the final phase of development, prior to testing in patients and, so far, the results look very promising

Clinical Practice Guidelines: A Valuable Tool for EB Clinicians

Picture of the covers of CPG's for wound care in EB
Two of the three so far completed CPGs for EB

EB is a condition that displays many different symptoms, varies widely in severity and can be very complex in nature. Clinical professionals who care for people with EB are presented with constant challenges and decisions as they work to ensure that their patients remain as healthy as possible.

In order to support them in their work and to ensure continuing improvements in EB healthcare, DEBRA International is driving an initiative to develop clinical practice guidelines (CPGs) for EB.

EB Specialists Gather for the First EB-CLINET Conference

Screenshot of a video of interviews with some of the delegates at the first EB-CLINET conference in Salzburg in October 2012
Click here to watch a video on the conference

106 participants from 33 countries gathered in Salzburg, on 5-7 October 2012, for the inaugural meeting of EB-CLINET - the clinical network for EB centres and experts.

Organised by the Academy of the EB House Austria, the meeting formalised the establishment of the European (and international) Reference Network for EB. Cumulatively, the centres participating in the meeting had over 6,600 patients with EB in their care.

First Gene Therapy Approval

Image courtesy of ponsulak at FreeDigitalPhotos.net

On November 2, 2012, a drug referred to as Glybera (produced by uniQure) became the first ever gene therapy to be approved for market, in the western world. The news of this gene therapy approval has generated a lot of excitement, as it is hoped that it will pave the way for other gene therapy approvals.

EBCare Reminder

Link to EB Care registry

Finally ... a reminder to all families living with EB to please consider registering with EBCare. Not all questions have to be filled out at once so it needn't take long. Every contribution to this valuable registry will make a difference!  

DEBRA International is the umbrella organisation for a worldwide network of national groups, working on behalf of those affected by the rare genetic skin blistering condition epidermolysis bullosa (EB).

DEBRA International Executive Committee 2015/2016
Cinzia Pilo (Italy) – President; Loreto Moore (Chile) – Deputy President; Shoaib Gopalani (Canada) – Treasurer; Brett Kopelan (USA) – Deputy Treasurer; Jimmy Fearon (Ireland) – Secretary; Anna Kemble-Welch – Deputy Secretary; Mia Werkentoft (Sweden); Michael Jaega (UK); Vassil Nikolov (Bulgaria)

Internal Auditors
Graham Marsden (UK); Rainer Riedl (Austria)

Michael Fitzpatrick (Australia) – CEO; Lea Prujean (New Zealand) – International Coordinator/ EB Without Borders; Clare Robinson (seconded by DEBRA Austria) – Head of Research; Avril Kennan (seconded by DEBRA Ireland) – Project Manager/ Clinical Practice Guidelines; Barbara Dissauer (seconded by DEBRA Austria) – Communications and Research Manager; Hayley Epps (seconded by DEBRA UK) – Communications Manager; John Dart (voluntary) – Senior Advisor to the Executive Committee

DEBRA International is a registered charity: ZVR 932762489

Contact: Am Heumarkt 27/1 | 1030 Vienna | Austria | Tel: +43 (0)1 876 40 30
e-mail: office@DEBRA-international.org | www.debra-international.org
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