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Our aims

The key objectives of the initiative EB-CLINET are to improve medical care for people with EB by encouraging collaboration between health care professionals working with EB and to accelerate the way to a cure for this disease by supporting the exchange of knowledge and the latest developments in EB research and EB care.

Our aims are:

Communication

  • to provide Information about training, meetings and EB-related events, on recent developments regarding treatments and research and updates on clinical trials, or calls for the recruitment of collaborators. Sign up for our newsletter!

Collaboration & Connection

  • to strengthen the collaboration between health care professionals and institutions worldwide already providing specialized medical care for people with EB.
  • to find contacts for medical care in the field of EB in and outside Europe presently lacking any such service - include these clinical contacts in the network and build up EB relevant knowledge.
  • to set up an online database of EB centres accessible to medical specialists as well as patients. See the partner map

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

 

Training

  • to train and instruct medical specialists so that they can act as EB specialists in their national EB centres. See events & trainings

Awareness/Role Model

  • to increase awareness and knowledge about EB and rare disorders.
  • to establish a role model for other rare diseases on how a network could be built and operated to share experiences and improve the quality of life of patients
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„With EB-CLINET we wish to provide a platform for connection, communication, and collaboration.”


Dr. Sophie Kitzmueller, Head of EB-CLINET
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