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November 2015

The latest news from DEBRA International

November 2015

Cinzia Pilo taking over presidency from Rainer Riedl: Notes from the new and the departing president

Portraits of a lady with long dark hair and man with greying hair
(c) Leo Wilkinson Photography

From 2011 to 2015, Rainer Riedl has put a wealth of ideas and energy into the DEBRA cause, to grow and strengthen the DEBRA International network. Read more

Our new president Cinzia Pilo, is starting her term with a grateful look back at the recent DEBRA and EB-CLINET conferences, and an enthusiastic approach towards the future. Read more

Events

DEBRA UK was proud to host EB-CLINET and DEBRA International Conferences

For the first time, the EB-CLINET and DEBRA International conferences were held at the same time (24-26 September 2015), same location (London) and shared one day of the programme. With over 320 delegates (more than ever before) from all over the world, this exceptional event exceeded expectations. There were many 'firsts' that marked the conferences, including:

Group picture of all the delegates in the conference room, waving their hands.
  • It was the first time that EB-CLINET has been held outside its founding country Austria.
  • It was the largest DEBRA International conference (270 delegates).
  • It was the largest EB-CLINET conference (214 delegates).
  • It was the largest number of countries to be represented at the conferences (35 countries).
  • It was the first time that we took delegates' photos to create an international 'Who's Who' of those working in the world of EB (this will be available soon).
  • It was the first time that any of the organising team had worked on delivering an international conference, and for many the first experience of organising an event!

The enthusiasm, passion and commitment to working together locally and internationally across specialities to support people living with EB was evident across both conferences. Read the conference report, see the picture gallery and the presentations

Clinical and research news

Keeping people living with EB at the heart of research

Word cloud, including "Inclusive", "Involvement", "EB", "DEBRA", "Scientists", "Patients", "Therapies" etc

We have initiated something new in the meticulous process of administering DEBRA research grants, which is in keeping with our ethos of ensuring that people living with EB are at the heart of all we do. For the first time, we have brought the 'patient voice' into the decision-making process around which areas of EB research to fund. Read more

DEBRA funding programme for clinical research and symptom relief

Hands in white rubber gloves, filling in a form. On the form lie a few coloured pills, and in the background some test tubes.

This year, DEBRA International has held a clinical research call for programmes which would take therapy development close to, or into clinical trials. This call focuses on research that will help to address the immediate, symptom-relief, treatment needs of people living with EB, as well moving towards clinical application of disease-modifying or curative therapies.

The application process is now at Stage 2, with nine research proposals having been selected for development into full-proposal applications. Read more

Progress in developing a skin-grafting gene therapy for RDEB

Logo of the GENEGRAFT research programme
Logo of the 7th framework programme of the European Union

The EU-funded GENEGRAFT project is developing a skin-grafting gene therapy for RDEB: by the end of the project in late 2016, the aim is to have grafted up to three people with RDEB in a small-scale, early-stage clinical trial to demonstrate the effectiveness of the treatment, and to assess how well tolerated it is by the patients. During the course of 2015, the project has achieved several key steps: most notably the development of a safer technology for putting the correct collagen 7 gene into the patient's own skin cells, from which the skin grafts are engineered. Read more

Guiding the guideline developers

Group picture: Workshop attendees

DEBRA International is leading the development of a series of Clinical Practice Guidelines (CPGs) for EB. These provide information on the best approach to EB medical care for clinicians and patients worldwide. They are therefore incredibly worthwhile but the task of developing them is not straight-forward and can be challenging to those involved. Supporting them in the development of CPGs is imperative to the success of the project. Read more

DEBRA around the world

Ireland: EB wound dressings are a basic human right

Bandaged hands with a blue-and-orange butterfly

A recent DEBRA-Ireland-supported study has taken an in-depth look at EB support services in Ireland and many of its findings are likely to be reflected across the globe. One of the strengths of this study is that it took an inclusive approach, incorporating the perspectives, experiences, views and hopes of those delivering services as well as those receiving them. The findings of the study revealed five priorities for future EB support services. Read more

Success for DEBRA Spain: Free bandaging material for people with EB

Boy with EB, wounded hands, playing with a wooden model of a sailing boat
© María Cano

After many years of negotiating, the Spanish Ministry of Health and the Regional Government have recognised the right of those affected by Epidermolysis Bullosa to have access to essential bandaging material for free. It took numerous meetings and a lot of persistence fromDEBRA Spain to achieve this. The reimbursement scheme is a huge success for Spanish 'butterfly children', as they are called, and will hopefully serve as a role model for other countries. 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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