As many of you are aware, Ryan’s Challenge has been collaborating with Dr. Sherene Shalhub and Dr. Peter Byers of the University of Washington on the Vascular Ehlers-Danlos Collaborative via the Patient-Centered Outcomes Research Institute (PCORI) research grant. This is a $50,000 grant aimed at bringing key members of the medical community (physicians and researchers) together with active members of the vascular EDS community (Ryan’s Challenge, FightEDS, EDS Today, and more). One of the hopes is that from this project we will better understand the most important research priorities of the vEDS community and pursue those projects accordingly.
The next step in the project is an exciting one—and it is where you can help!
Click this link and fill out this survey, http://bit.ly/vedssurvey. It is an anonymous and confidential survey meant for patients with a diagnosis of vascular EDS. The goal of the survey is to get a better understanding of the vEDS community and what our needs are. From there, the PCORI team will determine the next steps in terms of what are the most important research items to pursue next in vascular EDS.
You can help make this a success by participating in the survey yourself and by spreading awareness to other members of the vEDS community. Share the link with other vEDS patients you know, or on vEDS message boards. The more patients we have participate in the study the more we will learn! If you have any questions about the survey, please feel free to contact us. We look forward to pushing vascular EDS research further, bringing our community closer together, and getting one step closer to finding new treatments for vEDS patients.