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September 2013

The latest news from DEBRA International

September 2013

How do researchers see DEBRA?

Screenshot of a video, showing an EB researcher
Click to watch the latest video

As many of you know, DEBRA International has focused, for many years, on funding and supporting EB research. But what do the researchers think of our efforts? Have we helped to progress EB research? Does the EB research landscape look different to how it would if DEBRA didn’t exist?

Two major conferences approach

Colosseum in Rome, with a rainbow and a butterfly

The DEBRA International congress

We are counting down the days now, till we meet at the DEBRA International Congress in Rome, from the 20th to 22nd of September. The programme this year has taken its inspiration from the life stages of the person living with EB and will include the testimonies of patients and parents, as well as the expertise of researchers and medical professionals. Everyone who has been previously knows that they are in for a wonderful few days of sharing and learning. We haven't heard any complaints about the venue either! 

The second EB-CLINET conference

EB-CLINET is a shining example of a network of people working toward a common goal. In this case, the goal is to improve the medical care of people with EB. The second conference of EB-CLINET will be held in Salzburg on the 17th and 18th of September and promises to be every bit as valuable as the first. Major focuses will include current clinical challenges in EB, clinical practice guidelines, professional's education and training, EB registries and the translation of research into therapies. For those clinical experts attending, we very much look forward to seeing you there. For those of you who don't make it, we promise to update you afterwards!

EB without borders

Abstract world map with butterfly icon

Making connections across geographic and political borders is vital for DEBRA groups to grow, flourish and provide support to those with EB where there are no DEBRA organisations. 

EB without borders (EBWB) is a key initiative of DEBRA International. Its focus is on helping patients, families and doctors in countries where there is no or little support and to help establish national DEBRA groups.

Within the EBWB committee, Regional Ambassadors have been assigned to cover specific regions and provide guidance and mentoring support to individuals; as well as newly formed or existing national DEBRA chapters. 

A new addition to the EBWB team, the 'International Coordinator' will respond to all requests initially, and refer more complex cases and queries to the appropriate Regional Ambassador for further support. Read more

Two articles really worth a read

John Dart and Rainer Riedl of DEBRA International
John Dart and Rainer Riedl of DEBRA International, who have published an article on the role of DEBRA as a partner in EB research.

As many of you will remember, the EB2012 conference, held in Spain late last year, provided a great opportunity to assess the current state of play in EB research. A report on that conference has now been published in the Journal of Investigative Dermatology and beautifully summarises the information shared at the meeting. 

To coincide with this article, the journal has also published an editorial, by John Dart and Rainer Riedl, on the role of DEBRA International as a partner in EB research. If you read nothing else about DEBRA all year, read this short but enlightening piece, to understand the importance of DEBRA in progressing research.

Professional training opportunities

Introductory and advanced EB training courses, run by the EB Nurse Consultants at Great Ormond Street Hospital & St Thomas’ Hospital, will be held in December.

These very valuable courses are for health care or education professionals and booking is required. See here for more information.   

5 things you need to know about international rare disease organisations

Abstract group of people in a circle, holding each others' hands
Image courtesy of Danilo Rizzuti at FreeDigitalPhotos.net

Who are the big players?

Three of the biggest organisations in the world of rare diseases are EURORDIS, NORD and Orphanet. All three represent those living with rare diseases across Europe and America. They all have common goals: improving the diagnosis and care of those living with rare diseases and finding treatments and cures.

What is their mission?

EURORDIS is the voice of rare disease patients in Europe. They represent 30 million patients who are affected by 4000 distinct rare diseases. They advocate within the European Commission and other European institutions for policies that address the needs of patients and their families.

NORD stands for National Organization for Rare Disorders and is an American organisation. NORD is made up of a group of voluntary organisations, who work with people living with rare diseases. They are focused on identifying rare diseases and their treatment and cures through education, advocacy, research and services.

Orphanet is an organisation, based in France, which works in over 40 countries, collecting information on rare diseases from expert centres, medical laboratories, on going research projects and patient organisations. Orphanet compiles and shares this information with all audiences within the rare diseases community, through their Orphanet portal.

Read more

EB awareness week 2013

International EB Awareness Week poster, showing children's portraits from various countries and the claim "You can help people with EB"

EB Awareness Week 2013 will take place from the 25th of October to the 31st of October. Since its launch in 2007, the campaign has reached individuals and organisations in 76 countries around the world.

Now is the time to consider what you could do this year to increase awareness of EB. We love to get photos and reports for the website, so don't forget to let us know how it goes.

Get inspired and find more information and material for download on the EB Awareness Week website.

A focus on DEBRA Australia

As part of a new series of interviews, DEBRA International will be catching up with our international partners and letting you, the reader, gain invaluable insight into how their organisations work. Our first interview is with Michael Fitzpatrick of DEBRA Australia.

How and why was your organisation established?

DEBRA Australia as a national group was officially registered in 2005. It was a way to improve networking and sharing of information between the four DEBRA State groups that had been operating successfully for a number of years in Australia. This ...

  • allowed us to share fundraising and awareness ideas locally and internationally.
  • was a catalyst to lobby government for improved services for people living with EB.
  • was an opportunity to coordinate future networking and conferences for families.

Read more

Asking people living with EB what they want from research

Workshop group at a table
A workshop, where participants could discuss research priorities, played a major part in the study

A recent study, published in Orphanet Journal of Rare Diseases (OJRD), attempts to understand the research issues that are important to people suffering from dystrophic epidermolysis bullosa (DEB) and their clinicians, in order to prioritise the research efforts.

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)

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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