DEBRA International is the central body for a worldwide network of nearly 50 national DEBRA and EB patient support groups working on behalf of those affected by the genetic skin blistering condition epidermolysis bullosa (EB).
WHO WE ARE
The first DEBRA group was founded in the United Kingdom in 1978 by a group of parents whose children had EB. From these humble origins, DEBRA has grown significantly and is now international in scope. Over the past 40+ years, we have seen the establishment of nearly 50 national DEBRA groups around the world all working towards improving the lives of those living with EB in their respective countries.
With an increasing number of groups sharing common goals and working on common activities, it became clear that more could be achieved working together than each group working alone. DEBRA Europe was established in 1992 to serve as the central body of an international network made up of DEBRA (and other EB patient support) groups as its members. The organisation subsequently became DEBRA International in 2007 to reflect the ever-increasing international scope of its membership.
The key aim of the organisation is to coordinate, in collaboration with its members, activities that are for the benefit of everyone affected by EB globally: the international patient community, patient support and advocacy groups, healthcare professionals, researchers, and industry.
A world where anyone living with EB has support from a DEBRA group to access clinical and social care.
Promote and coordinate international collaboration between patients, health and social care professionals, researchers, NGOs, and governments to improve the lives of those living with EB while cures are found and made available for all types of EB.
1. Develop and support our international
network of DEBRA groups.
2. Develop and promote best practices
for EB care and increase professional
knowledge of the condition.
3. Coordinate international research
efforts to better understand EB, to find
effective treatments, and to develop
cures for all types of EB.
4. Work closely with industry and
institutions that are developing and
commercialising symptom relief
treatments and cures.
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 have 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 areas.
DEVELOPING COUNTRY SUPPORT
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.
MEET THE TEAM
Meet the members of the Executive Committee who govern the organisation and the staff members who head up its programmes.