Started in 2017* by Dr. Sherene Shalhub of University of Washington, the vEDS Collaborative aims to our efforts to unite patients, caregivers, family members, and care providers in designing and advancing vEDS research questions.
Engagement of stakeholders (patients, clinicians, payers, employers, policy-makers, researchers) must be a core component of future research related to clinical research on Vascular Ehlers-Danlos Syndrome (vEDS). The vEDS Collaborative aims to build the infrastructure necessary for researchers to recruit and sustain partnerships with patients and other stakeholders that will inform their research work.
Stakeholder engagement via the vEDS Collaborative will provide an opportunity to keep stakeholders informed of our progress, assess the current state of existing networks and research infrastructures, obtain input on research priorities, and understand how to best present this evidence to effectively inform decision-making.
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*Funding acknowledgement: the vEDS Collaborative is funded by a Pipeline-to-Proposal Award (Tier A) from the Patient-Centered Outcomes Research Institute.