A new resource for managing hypertension in children with NF1

Author: Rosemary Anderson

Published On: 01/17/2022

A collaborative of specialists from around the globe has come together with a vision to help patients with pediatric Renovascular Hypertension (pRVH) get the best care possible. This diverse and comprehensive team of researchers, clinicians, patients and families will improve the quality of life and treatment outcomes for pRVH patients.

The first Inaugural Symposium, hosted in 2019, brought together a multidisciplinary group of clinicians and researchers.  It highlighted best practices in patient care and recent discoveries in pRVH. Following the 2019 Symposium, the pRVH Patient Centered Outcomes (PCOR) Collaborative was established to expand upon these discussions and to engage patients and their families affected by pRVH as partners.

You are invited 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, your engagement and participation will serve to advance the care and research critical to navigating the complex landscape of pRVH.  You can join by completing this short form in order to be alerted to educational, research and treatment opportunities. Your experience with pRVH will be especially valuable to the understanding of this complex condition.  When completing the survey be sure to explore the information and personal stories on the website.

Learn more and visit the pRVH Patient-Centered Outcomes Research (PCOR) Collaborative website here.