Turning Interest Into Action
To create and sustain a collaborative network of diverse stakeholders, individuals, and organizations…
…to understand patient needs…
..and determine the research methods best suited to study the adverse health implications associated with vEDS.
Patient Centered Research in vascular EDS
The vEDS Collaborative is dedicated to supporting the vEDS community in driving patient-centered outcomes research (PCOR) to improve the management of vEDS and increase the quality of life for people impacted by vEDS.
Build the infrastructure necessary for researchers to create and sustain partnerships with patients and other stakeholders that will inform their research work.
Connect stakeholders with the resources and education necessary to empower them as equitable and meaningful research partners.
Create cooperative opportunities between patient advocacy organizations and empower them to advance research efforts.