Search Results - "Fulton, Daphne S."

Setting a research agenda for vascular Ehlers-Danlos syndrome using a patient and stakeholder engagement model by Sage, Liz, Russo, Melissa L., Byers, Peter H., Demasi, John, Morris, Shaine A., Puryear, Lauren N., Fulton, Daphne S., Shalhub, Sherene

“…Vascular Ehlers-Danlos syndrome (vEDS) is a rare, syndromic, heritable condition with life-threatening complications that include aortic and arterial…”
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Assessment of the Information Sources and Interest in Research Collaboration Among Individuals with Vascular Ehlers-Danlos Syndrome by Shalhub, Sherene, Sage, Liz, Demasi, John, Wallace, Stephanie E., Fulton, Daphne S., Bloom, Lara, Driessnack, Martha, Byers, Peter H.

“…Patient-centered research requires active engagement of patients. The vascular Ehlers-Danlos Syndrome (vEDS) research collaborative was established to…”
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