Introducing PVRI’s Patient Engagement & Empowerment Series

Living with pulmonary hypertension (PH) can feel overwhelming — but no one should feel they have to navigate it alone. 

At PVRI, we believe that knowledge, confidence, and connection are the foundations of feeling empowered in your care. That’s why our IDDI Patient Engagement & Empowerment Workstream has developed a new series designed specifically for people living with PH, their families, and their carers.

This series explores 11 key themes that reflect the everyday realities and needs of the PH community. Each theme includes a short, patient-friendly video featuring insights from people living with PH, carers who walk the journey alongside them, and clinicians who support them. These stories and tips offer encouragement, practical advice, and reassurance — especially for those feeling unsure, newly diagnosed, or wanting to take a more active role in their care.
 

What the series covers

The themes focus on real, actionable ways to build confidence and resilience, including:

1. Understanding the disease and treatment
2. Accessing psychological support and mental wellbeing resources
3. Practising self-care and making lifestyle adaptations
4. Engaging in shared decision-making in healthcare
5. Connecting with peer-to-peer support and community engagement
6. Exploring clinical trials and research participation
7. Supporting and empowering carers and family members
8. Finding financial and practical support
9. Becoming a patient expert and advocate
10. Building an empowerment plan
11. Accessing resources and support networks

Each theme is designed to meet people where they are — whether they’re looking for clarity about their diagnosis, wanting to improve communication with their healthcare team, or interested in strengthening their emotional and practical support systems.
 

Resources you can share and personalise

To help reach more people around the world, we’ve also created editable posters and leaflets that patient associations can personalise with their own logo and details. These are quick to use, easy to adapt, and ideal for sharing online, in clinics, or at events.
 

Why empowerment matters

At its core, empowerment is about helping people feel capable, understood, and supported. It’s about giving patients and families the tools they need to ask questions, make informed decisions, find community, and—when they’re ready—use their voice to help others.

Small steps make a big difference. And when the PH community moves forward together, the impact is even stronger.

We hope these materials bring comfort, clarity, and confidence to anyone affected by PH — and we invite you to share them widely within your own networks and communities. 

You can watch all videos and download the resources here.

Explore the series