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Research News

Group picture of the participants of the 1st EB-CLINET Register Workshop


1st EB-CLINET Register Workshop

Starting point for the creation of an international EB register to facilitate patient recruitment for clinical trials, and to improve diagnostics and disease course prediction.Read more

Logo of the European Rare Disease Organisation EURORDIS


EURORDIS Policy Discussion Meeting: "The Transparency Directive"

Faster Access to Medicines for Rare Disease Patients. Watch the meeting on 26 Feb 2013 live on EURORDIS TVRead more

Mark de Souza of Lotus Tissue Repair


Large pharmaceutical spotlight on EB

Big pharmaceutical company Shire, with strong focus on rare human genetic diseases and considerable expertise in protein replacement therapies, acquires Lotus Tissue RepairRead more

Hand holding a pipette with drop of liquid


First gene therapy approval

First ever approval for a gene therapy may pave the way for EB gene therapiesRead more

Group picture of participants of EB 2012, DEBRA International EB research conference


EB 2012: DEBRA International EB research conference

Outcomes and future of EB research have been discussed and evaluated among the leading EB research teams.Read more