WHAT WE DO
We foster communication and collaboration with our member groups on international projects across EB research, an EB patient registry, best clinical practice, developing-country support, grants, and DEBRA and EB-related events.
DEBRA groups continue to be the leading funders of EB research worldwide investing in projects based on the needs and demands prioritised by the EB Community. DEBRA’s investment for more than three decades has supported many discoveries in EB, which have then led onto further investigations and trials.
EB PATIENT REGISTRY
DEBRA groups are collaborating to develop and maintain an international EB patient registry. The registry will allow EB healthcare professionals to capture the demographics of EB, identify patients for clinical trials, and provide evidence for advocacy among others.
BEST CLINICAL PRACTICE
With the help of over 300 clinical and patient volunteers combined with funding from DEBRA groups, we are coordinating the creation of best clinical practice guidelines for EB. These guidelines are vital in providing internationally consistent standards of care. Recommendations from these form the basis of patient versions and infographics for use in low resource settings.
Our EB Without Borders team is made up of volunteers from established DEBRA groups. The team operates in a global capacity responding to requests for information and help from people affected by EB (people with EB, their families, and healthcare professionals) in any country where there is currently no DEBRA group structure in place and little to no clinical knowledge of EB.
Continuing professional development plays a vital role in maintaining the expertise of EB professionals, and high standards of EB care and research worldwide. Funded by DEBRA groups, we coordinate grant rounds for EB professionals to access learning opportunities. We also hold grant rounds for our member groups to provide them with funding for their own projects and activities.
DEBRA AND EB-RELATED EVENTS
International DEBRA events are a regular occurrence. They bring DEBRA group delegates, scientists and researchers, healthcare professionals, EB patients and families, and industry representatives together to consult on advocacy activities and priorities as well as briefings on major developments in clinical care and therapy development.