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December 2013

The latest news from DEBRA International

December 2013

Portrait of Rainer Riedl, President of DEBRA International

Dear colleagues,

2013 has been a good year for DEBRA International and the articles in this newsletter are reflective of some of the exciting developments and events in recent months. I look forward to continued working with you over the course of 2014 and to witnessing DEBRA International growing even stronger. I would like to say thanks to all of you for your support and your engagement and to wish you all a very happy Christmas and New Year.

Rainer Riedl,
President of DEBRA International 

You immediately feel the bond we all share

Group picture of the participants of the DEBRA International Annual Congress in Rome, 2013
Participants of the DEBRA International Annual Congress in Rome, 2013

For the first time, journalist Dorothee Rahn participates in a DEBRA International congress and gets involved with the EB community. Read about her impressions.

Isn't it amazing how much information you can pack in only three days? That was my immediate thought when I looked at the schedule of this year's DEBRA congress in Rome, Italy. And I haven't been disappointed. What I experienced was three days full of interesting presentations, nice encounters with people and lots of different experiences in the area of EB. Read more

2nd EB-CLINET Conference: Clinical EB experts met in Salzburg

Group photo of attendees at the 2nd Conference of EB Clinet Clinical Network of EB Centres and Experts, September 17-18, 2013 - Salzburg, Austria

The second meeting of the EB-CLINET network partners provided the framework to discuss EB best-practice care, registries and professional training.
This year's EB-CLINET conference was held at the General Hospital (Paracelsus Medical University) Salzburg from 17-18 September 2013, attracting 91 delegates from 29 countries across the world.

Read more

One of the most awarded marketing campaigns ever ... and all for EB

Campaign image "Rabbit-hedgehog" and screenshots of the twoTV spots "Dress" and "Drinking glass"
New image "Rabbit-hedgehog" and TV spots "Dress" and "Drinking glass"

How do you explain how life can feel to someone living with EB?
The advertising agency Lowe GGK Austria and DEBRA Austria have created a powerful and emotional campaign entitled "This is how life feels to people with EB". Using images and videos it captures the public's imagination, showing how everyday objects can feel to someone living with EB.
Use this award-winning campaign that is available for free to all DEBRA groups to create awareness for EB. 
Read more

New smartphone app for scoring EB severity

Screenshot of the new app iscorEB
Screenshot of the new app iscorEB

Dr. Elena Pope reports on a new tool called iscorEB - instrument for scoring clinical outcomes for research of EB. It is aimed at scoring EB disease severity without any great effort.

"It is my great pleasure to inform the EB community that, after many years of international collaboration, we have finalized a tool aimed at scoring EB disease severity, named iscorEB (instrument for scoring clinical outcomes for research of EB)."
Read more

DEBRA Ukraine opens specialised EB Office

Woman sitting in the new EB office at the Okhmatdet National Children's Hospital
EB office at the Okhmatdet National Children's Hospital

As a joint initiative, the international NGO Dermatologists for Children (DEBRA Ukraine Center) and the Okhmatdet National Children's Hospital have opened the first specialised EB expert center in Ukraine. The so-called EB Office will provide butterfly children from all over Ukraine with expert medical care. Read more

What one tweet did for EB awareness

Screenshot of Harry Styles' tweet for EB Awareness Day
Harry Styles' tweet for EB Awareness Day

If we had a magic wand, how would we use it to create more awareness for EB? Top of the wish list would most likely be to get one of the biggest stars in the world to tell all their fans about EB. With a little bit of creativity, a little bit of luck and a lot of hard work, the team at DEBRA Ireland managed to do just that, for this year's EB Awareness Day, on October 25th. With the help of 9-year old Claudia Scanlon, a "One Direction" fan who has EB, they persuaded the most popular member of the band, Harry Styles, to join DEBRA Ireland's "Release Your Butterfly" campaign. This campaign called on DEBRA supporters to "release their butterfly", in the form of photos of butterfly tattoos, transfers, drawings etc., shared through social media. Read more

A focus on DEBRA Libya

Salem Al Salhi (president DEBRA Libya) with journalist Dorothee Rahn
Salem Al Salhi (president DEBRA Libya) with journalist Dorothee Rahn

'If you start with nothing, you will need everything'

In the second part of our DEBRA focus series, we call Salem Al Salhi and Hesham Faitori before the curtain, to tell us more about their newly founded DEBRA Libya.

What are the challenges they face, opportunities that have opened up, and their plans for the future? Read more

Five EB videos you need to watch

Snapshot of the 5 videos on EB
Snapshot of the 5 EB videos you need to watch

The internet is full videos on EB. You could spend endless hours on YouTube and Vimeo watching documentaries, personal stories and research updates.

To help direct you, we have compiled a list of our top 5 videos on EB. There are many more excellent videos out there but we think these ones are really worth making the time to see. Read more

Ever have trouble explaining EB?

Infographic created by FIENDISH.com (click to enlarge) Download png or pdf file on FIENDISH.com
Infographic created by FIENDISH.com (click to enlarge) Download png or pdf file on FIENDISH.com

We all know what a struggle it can be to describe EB. Trying to explain something so complex and varied, in a few simple lines that will be understood and remembered, is a huge challenge.

Thankfully, James Dolan, a talented digital designer, who has a son with EB, has come to our aid, in the form of a beautiful EB infographic. He has kindly made this infographic freely available but if you do use it, please credit James and his company fiendish.com.

Get the full resolution image on fiendish.com 

Shire recognized for commitment to DEB therapy

Brett Kopelan (DebRA of America), Lawrence Charnas, Lin Guey (both Shire)
Brett Kopelan (DebRA of America), Lawrence Charnas, Lin Guey (both Shire)

Shire was recently honored with one of three Partners in Progress awards at the DebRA of America benefit sponsorship event, held at the Museum of Modern Art in New York City during EB Awareness Week.

Accepting the award from Shire was Lawrence Charnas, MD, PhD, Director and Head of Discovery Medicine, and medical lead for Shire's DEB work during pre-clinical activities and Lin Guey, PhD., Assoc. Director, Discovery Biology and Translational Research, and pre-clinical lead for Shire's DEB project. Read more

Shire's "Visiting Patient Series" focusing on DEB

Shire logo

Recognizing the importance of promoting education and disease awareness for Shire employees, the company's "Visiting Patients Series" programme recently included a visit from people living with EB.

In 2013, Shire took its first steps toward developing a potential protein replacement therapy for Dystrophic Epidermolysis Bullosa (DEB) with the acquisition of Lotus Tissue Repair and the investigational therapeutic candidate protein recombinant collagen VII (rC7). Read more

Patient views on the regulation of medicines

Blackboard with feedback options "Positive" - "Neutral" - "Negative" and according smileys
Image courtesy of Grant Cochrane / FreeDigitalPhotos.net

How should we weigh the risks and benefits of medicines? And who should do so? Contribute to a European research study and get your voice heard!

As part of a European research study, Genetic Alliance UK and researchers at the University of South Wales want to understand how patients perceive the risks and benefits of medicines. The work is important to ensure that patient views are valued in the regulation of new medicines. Read more

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)

Staff
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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