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EB-Research Network

Members & partners

EB-Research Network – EB-ResNet – is a group of patient organisations aiming to find cure for people living with EB.

EB-ResNet member DEBRA UK was the first EB-dedicated patient organisation to be founded, and supported the majority of early-stage research from the 1980s onwards into understanding EB: this research formed the basis for emerging diagnostics and concepts for therapy. Subsequent expansion of the number of national EB patient organisations, including >50 DEBRAs worldwide, has increased research support to create the depth and breadth of knowledge now available for clinical translation. 

EB-ResNet continues to support excellent research, worldwide, to increase understanding of the causes and consequences of epidermolysis bullosa, and to develop the evidence base for development of better clinical care, diagnostics,  and disease-modifying therapies for those with EB. The network is resourced through its member organisations and partners.

Most of the activities now coordinated by EB-ResNet were formally managed by DEBRA International and its national member groups. The most research active groups have now joint forces to pave the way for effective curative and quality-of-life treatments for all people living with Epidermolysis Bullosa (EB).

EB-ResNet member organisations

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