• Help people with EB

    Your support of DEBRA International or a national EB group enables us to provide the best quality of life for families and individuals affected by EB.

Donation Account: IBAN AT65 6000 0005 1004 5254, BIC BAWAATWW, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

donate now

Research News

22.03.2017

Amicus Phase 3 Study in EB (ESSENCE) Nearing Completion of Enrolment

Amicus Phase 3 Study in EB (ESSENCE) nearing completion of enrolmentAmicus Therapeutics’ ESSENCE Study of the investigational topical cream for wound healing (SD-101) in EB is rapidly nearing completion of enrolment. It is anticipated that patient enrolment will close in the coming weeks.Anyone interested in participating in the trial should contact one of the approximately 40 international...[more]

09.02.2017

DEBRA International newly funded research projects

DEBRA International newly funded research projectsFrom the call for research proposals across all four of DEBRA International’s research priorities last year, several new projects have been funded.  Our ‘All-priorities’ calls allow for proposals on topics which may explore in depth the causes and consequences of EB, which can lead to breakthrough novel concepts for the diagnosis or...[more]

14.12.2016

Strengthening the Clinical Practice Guideline initiative

Strengthening the Clinical Practice Guideline initiativeDEBRA International, in collaboration with EB-CLINET, is undertaking a long-term initiative to develop clinical practice guidelines for EB, in order to improve EB clinical care. To support progression and expansion of the initiative, a scoping project was undertaken during the period February-July 2016, to assess the needs of the different...[more]

14.12.2016

Wound Healing in Epidermolysis Bullosa Clinical Research Review and Priority-setting Consensus Meeting

Wound Healing in Epidermolysis Bullosa Clinical Research Review and Priority-setting Consensus Meeting On the 5th and 6th of December, DEBRA Austria and DEBRA UK jointly supported and organized a 'Wound Healing in EB' roundtable meeting in London. As a by-invitation event, limited to just 25 people to facilitate useful discussion and exchange of experience, the meeting brought together roughly...[more]

18.10.2016

Expansion to new sites worldwide of phase 3 clinical trial of topical cream SD-101 for all EB types

As an update on the DEBRA news item of 17 August 2015, the number of sites at which people with any type of EB being enrolled into the ‘ESSENCE’ clinical study of the cream SD-101 has increased to 25 around the world, with still more planned.[more]