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The latest news from DEBRA International

EB Without Borders                 Living with EB - meet artist, Femmy Broer

Research                         
        DEBRA Chile, Norge, and Spain


Upcoming events

  •         EB Without Borders

      Building bridges, breaking barriers

    "You're the first person who knows
       what EB is and what my child is
        going through. I am so tired of
         explaining, tired of not being
               understood. So tired.”


    A two-part special. Find out about one of our EB Without Borders Ambassadors as they reveal their work helping a family in Pakistan who are struggling to get their baby who is living with EB the care he needs.
    Read more here

  •             Living with EB

             Meet artist, Femmy Broer

    "An international film project about   young adults with EB. What are their dreams and ambitions, which obstacles are in their way and how           do they deal with them
    .”


    Like many people living with EB, Femmy who has DDEB has had to face certain unexpected situations in life. Discover her story here as she embarks on her graduation film project where she needs your help. Get in touch if you are between 18 and 29 years old and are willing to share your story.
    Click here to find out more

                                         Research

                      DEBRA International newly funded research projects


From the call for research proposals across all four of DEBRA International’s research priorities last year, several new projects have been funded.
                                          Read more here

  •              DEBRA Chile

    IX Symposium of Epidermolysis Bullosa


    Held in December 2016, the main objective of this Symposium is to educate patients and healthcare professionals on clinical care and research on EB.
    Read more here


                 DEBRA Spain

          Co-funding research in 2017


    DEBRA Spain this year are co-funding a clinical trial on human mesenchymal stem cells to treat EB and covering the employment of a molecular geneticist to facilitate access to genetic diagnoses for people with EB.
    Read more here

  •                 DEBRA Norge

    DEBRA Norge aim to broaden awareness
                             of EB


    During the 2017 annual NIFS (Norwegian Health Workers Society for Wound Healing) Congress, DEBRA Norge participated with our own booth.
    As 525 clinicians and specialist wound care nurses together with several representatives from the industry gathered, we positioned ourselves to create awareness of EB and the great work DEBRA provides both domestically and internationally. Following two full days of active dedication we are happy to report great interest in DEBRA and what we stand up for in terms of patient rights, individual care, and research. Many new DEBRA friendships where established.
    Lars Mikkelsen, Board Member, DEBRA Norge

                                       Upcoming events

                                  Click on the images to find out more



  •        28 February 2017


       
         2017 marks the 10th
          anniversary of Rare
               Disease Day.


  •      16 March 2017
     Birmingham Children’s
            Hospital, UK

      An interactive course
      that brings medical
      professionals together
            to share EB
         care experiences.


  •     18-22 April 2017
            Buenos Aires,
               Argentina

     A session on EB will be held on 21 April focusing on diagnostics as well as on new developments in research and treatments.

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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