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 map of EB Clinet Contacts
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
