PH patient resources

Clear, practical resources for people living with pulmonary hypertension (PH), their families, and carers

Living with pulmonary hypertension (PH) can bring many questions — about your health, your care, your choices, and the support available to you.

Our PH patient resources collection has been created by PVRI’s IDDI Patient Engagement and Empowerment Workstream, and is designed to help you feel more informed, confident, and empowered. Each series focuses on a different topic, with clear videos and practical guidance you can watch, read, and share at your own pace.

Explore our PH patient resource collection

An 11-part series to support people living with PH, their families, and carers.

This series explores what empowerment means in everyday life — from understanding your disease and treatment options to finding support, making decisions about your care, and, when you’re ready, helping others too.

You’ll learn about:

  • understanding PH and treatment
  • looking after your mental wellbeing
  • practising self-care
  • taking part in shared decision-making
  • connecting with peer support
  • exploring research and advocacy

Explore the 'How to empower yourself & others' series

A 13-part series to help people living with PH, their families, and carers understand clinical trials.

This series explains what clinical trials are, how they work, what taking part can involve, and what rights you have if you are invited to join a study. It also explores how patients can help shape research as partners, not just participants.

You’ll learn about:

  • what clinical trials are
  • why they matter for patients
  • possible benefits, risks, and expectations
  • informed consent and patient rights
  • what to expect day to day
  • how patients can shape trial design

Explore the 'Understanding clinical trials' series

What each series includes

Each PH patient resource series is designed to be easy to watch, read, share, and adapt for your community.

Each series may include:

  • a short video series, with each video focused on one clear topic
  • shareable flyers for patients, patient associations, or research teams
  • co-brandable resources that patient associations can adapt with their own logo
  • YouTube videos with captions and auto-translate, so people can watch in almost any language

These resources are designed to support patients wherever they are in the world, and however they prefer to learn.

Find out more...

Living with PH
Learn about pulmonary hypertension
Explore patient resources
Find local support
Get involved with PVRI
Patient Engagement & Empowerment image

The PH patient resources collection has been created by PVRI’s IDDI Patient Engagement and Empowerment Workstream, which brings together people committed to improving patient information, involvement, and empowerment in PH.

Learn more about their work

More series coming soon

We’ll continue to build this collection with new topics to support people living with PH around the world.

 

Have an idea for a future series? We’d love to hear from you.