Date: Aug. 13
Time: 11 a.m. EDT/4 p.m. UTC+1

Join the PVRI PHGPS Task Force, the Pulmonary Hypertension Association and PHA Europe to explore how patient associations can use recent survey data to support local advocacy, education and planning.

The Pulmonary Hypertension Global Patient Survey was shaped by patients, caregivers and patient associations around the world.

In “From Data to Action: Exploring the PHGPS Data Dashboard for Patient Associations,” we’ll introduce the dashboard and demonstrate how patient associations can explore and use the data. We’ll also look ahead to the next survey, PHGPS Round 2. Webinar participants will have the opportunity to reflect on what more patient associations need to know, share feedback and find out how to support future dissemination, translations and survey development.

In this webinar, we’ll explore:

  • The purpose of PHGPS and progress from the first phase
  • How patient associations contributed to PHGPS Round 1
  • The impact of the survey so far, including published outputs and the 10 calls to action
  • How to access and use the PHGPS Data Dashboard
  • Practical ways patient associations can use the data locally
  • Opportunities to shape and support PHGPS Round 2 

This webinar is designed for patient associations, but anyone with an interest in the PHGPS is welcome, including patients, caregivers, clinicians, industry partners, researchers and the wider PH community.

Register now

Speakers

Matt Granato
President & CEO
Pulmonary Hypertension Association

Hall Skaara
PHA Europe

Paula Appenzeller
PVDU Clinical Research Fellow
Royal Papworth Hospital NHS Foundation Trust Cambridge

Survey highlights invisible burden of pediatric PH caregivers

For caregivers of children with PH, the invisible burdens are steep, according to results from the Pulmonary Hypertension Global Patient Survey: Understanding the Invisible Burden of Pediatric Pulmonary Hypertension.

Learn more