The WSA is pleased to be a member of the University of Michigan’s new pRVH Patient-Centered Outcomes Research (PCOR) Collaborative, which has been created to connect patients with renovascular hypertension and their families with the information, resources, and support they need to understand the disease and to pursue the best possible treatments and outcomes. The collaborative includes clinicians, researchers, and families from across the globe.

If your child with Williams syndrome has been diagnosed with renovascular hypertension or mid-aortic syndrome, you will want to join this new research collaborative. The collaborative helps patients with pediatric renovascular hypertension get the best care possible. Their diverse and comprehensive team of researchers, clinicians, and families will improve the quality of life and treatment outcomes for pRVH patients, and identify lessons possibly applicable to other rare disorders affecting children. 

Join the Collaborative

We encourage you to join the pRVH PCOR Collaborative Virtual Research Network. Whether you are a person with pRVH, a family member, clinician, researcher, or other critical stakeholder, the Collaborative needs your engagement and participation to advance the care and research critical to navigating the complex landscape of pRVH. By sharing your information to join this Virtual Research Network (VRN), you’ll get access to the Collaborative’s updates, research, and educational resources, outreach, and support. You will have access to:

  • pRVH PCOR Collaborative updates
  • Outreach and family support
  • Clinical and educational resources
  • Research resources and opportunities
  • Scientific updates and guidance

Click the button below to join the pRVH PCOR Colloaborative today.