Donation Account: IBAN AT656000000510045254, BIC BAWAATWW, EB-CLINET, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

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Aims of the project

The key objectives of this initiative are to improve medical care for people with EB and, by providing a basis for clinical trials, to accelerate the way to a cure for this disease.


Collaboration/Share knowledge

  • Strengthen the collaboration between medical institutions worldwide already providing specialised medical care for people with EB
  • Find "candidate centres" for medical care in the field of EB in and outside Europe presently lacking any such service - include these centres in the network and build up EB relevant knowledge there
  • Set up an online community (database of EB centres accessible to medical specialists and patients, website, etc.) and an online database for best-practice medical care in EB

International cooperation is a vital prerequisite for the exchange of knowledge and experiences in order to provide blanket coverage of medical care for EB patients all over the world.

Training

  • Train and instruct medical specialists so that they can act as EB specialists in their national EB centres
  • Develop a comprehensive programme for training and further education for medical and social care as well as research specialists (doctors, therapists, nurses, social workers, scientists, etc.)

Research

  • Provide a sound basis for recruitment of patients for multi-centre clinical studies to prove efficiency, efficacy, and safety of new treatment methods
  • Support EB research in as many countries as possible

Awareness/Role Model

  • Increase awareness and knowledge about EB and rare diseases
  • Establish a role model for other rare diseases on how a network could be build and operated to share experiences and improve the quality of life of patients