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EB Research Network Aiming for a world where EB is curableAnnual Report #2022Prepared by Sandra Eder EB Resnet Coordinator May 2023WWW.EBRESEARCHNETWORK.ORGCONTENT 1.Summary ...................................................................................................................................................................12.EB
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Go to the EB Research Network website
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Who needs eb research network?

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Scientists and researchers interested in epidermolysis bullosa (EB) research
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Patients, families, or advocates seeking information and resources related to EB
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The EB Research Network is a collaborative initiative focused on advancing research and understanding of Ehlers-Danlos syndrome (EDS) and related conditions through shared data and resources among healthcare professionals and researchers.
Researchers and healthcare providers involved in the study and treatment of Ehlers-Danlos syndrome and related conditions are required to file with the EB Research Network.
To fill out the EB Research Network, participants must register online, complete the relevant forms with accurate patient and research data, and submit them via the designated online platform.
The purpose of the EB Research Network is to facilitate collaboration among researchers, improve understanding of EDS, enhance treatment options, and ultimately support better patient outcomes.
Information that must be reported includes patient demographics, clinical data, treatment outcomes, research findings, and any relevant genetic or familial data associated with EDS.
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