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Donation Account: IBAN AT65 6000 0005 1004 5254, BIC BAWAATWW, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

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04.11.2015

A look back from the departing president, Rainer Riedl

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

"When I started my presidency in October 2011, I had plenty of ideas how to promote and further strengthen DEBRA International. Some of those ideas felt more important than others, to our mission to improve the lives of people with EB.

Back then, my notion was that these three were key to strengthen our DEBRA International umbrella group:

  • Convince DEBRA groups to use a common branding to ensure that we are seen as a worldwide, strong and professional network.
  • Make sure the DEBRA International website fulfils its potential as a central hub of information – and encourage members to use the website and social media to share information and experiences.
  • Boost EB research and attract the funds to be able to support basic novel- concept research as well as clinical programmes and studies.

You can always wish for more but I am truly happy that the Executive Committee and all the wonderful people who are supporting our mission have done a tremendous job in meeting these and other challenges: Plenty of new groups have joined the DEBRA International network and made it stronger.

Through our EB Without Borders initiative, we have provided guidance and support for young groups to get started and for small ones to grow. The EB Without Borders group has benefited from its new and dedicated International Coordinator, Lea Prujean. Requests for help can now be channelled and followed up more efficiently.

Complementing our DEBRA patient group umbrella organisation, the EB-CLINET network has been established to link EB centres and experts around the globe. Today EB-CLINET has about 60 partners in more than 50 countries which is a great success, and so was the 3rd EB-CLINET conference that took place a few weeks ago. Collaboration between CLINET and DEBRA International is active and fruitful.

Our website and Facebook page have become valuable sources of information; they reflect what DEBRA International is about and can offer. Not the least, these channels make life easier for all of us because a variety of valuable material can be downloaded and/or shared.

Last but not least, one of DEBRA International's core missions is to foster research into EB, for all types and and at all stages of development. We have funded research into the genetics and biology as well as diagnostics of EB, novel-concept ideas and proof-of-concept studies, for over 30 years.

As research is now moving closer to the clinic, we facilitate and fund clinical research to develop therapies for this yet incurable condition. A relatively new focus is on symptom relief, to alleviate the many complications that accompany the various types of EB.

Over recent years, DEBRA International, through its member groups, has invested about 1.5 million euros per year in peer-reviewed EB research. And we will continue to source the funds necessary to maintain this course.

After these four years as president of DEBRA International let me thank you all who have joined their efforts to make a difference for people living with EB and say that this has been a unique experience. I wish the best of luck and success to Cinzia Pilo, who has kindly taken on the role of DEBRA International president this September."

Rainer Riedl, former President of DEBRA International and Chairman of DEBRA Austria

Man with greying hair

Rainer Riedl, former President of DEBRA International and Chairman of DEBRA Austria. (c) Leo Wilkinson Photography