Our aims
The key objectives of the initiative EB-CLINET are to improve medical care for people with EB by encouraging the 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 trainings, meetings and EB-related events, on recent developments regarding treatments and research and updates on clinical trials, or calls for recruitment of collaborators. Sign up to 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 there.
- 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 in order 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 diseases
- to 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
