International networking guarantees the best care for the “butterfly children”.
In the case of a rare disease like EB, expertise is widely scattered around the world. This is why the EB Academy established the EB-CLINET clinical network in 2011, in order to make developments in other countries accessible to Austrian patients and to pass on our own expertise to the world in return. This global network of EB centres and experts facilitates cooperation and promotes communication, quickly providing new insights into the treatment of EB to all patients. An EB-CLINET conference takes place roughly every two years, providing a fixed framework for global experts to exchange information.
107 partners from 59 countries are currently registered in the EB-CLINET network, mainly physicians and other medical personnel. The long-term goal is to have at least one first point of contact for EB patients in every country in the world to help improve the patients’ quality of live and accompany them on their often arduous journeys through life in their own countries, obviating the need for stressful travel, language difficulties or financial hurdles.
The objectives of the EB-CLINET initiative are:
to establish a worldwide network for all EB centres and experts
to promote the exchange of EB knowledge and experiences
to ensure the simplification of cross-border care
to create a basis for the recruitment of EB patients for clinical trials
to offer new therapy options to all patients in a timely manner, and consequently to
ensure proper treatment for all people living with EB