How to empower yourself & others
Our IDDI Patient Engagement and Empowerment Workstream are creating an 11-part series to support people living with pulmonary hypertension, and for their families and carers. The series is designed to help people living with PH to feel more informed, confident and empowered.
Living with pulmonary hypertension (PH) is a major challenge, but you are not alone — and you are not powerless.
Empowerment means gaining the knowledge, skills, and confidence to actively shape your healthcare journey, improve your quality of life, and, when ready, help others. This page provides practical advice, encouragement, and resources for patients, families, and carers.
Why is empowerment important?
Empowerment transforms patients from passive recipients of care into active participants. It helps you to:
- understand your disease & treatment options
- participate in decisions about your care
- reduce stress and feel more in control improve communication with your healthcare team and family
- choose to help others as a patient expert or advocate, influencing research, policy, and care improvements
Key areas of empowerment
Living with PH can be challenging — but you are not powerless. Empowerment means gaining the knowledge, confidence, and support you need to play an active role in your care and live your best possible life. Empowered patients often experience better health, less stress, and a stronger sense of control. Empowerment takes initiative and time — learn, connect, and ask for help when needed. Empowerment gives you strength, resilience, and hope.
Click on each heading below to learn more.
Being informed helps you make better decisions. Knowledge is power
- Ask questions during appointments. Write them down beforehand
- Find reliable information — through patient associations, trusted websites, and medical experts.
- Explore clinical trials if you’re interested — ask your doctor what’s right for you
When you understand your disease, you can make informed decisions and advocate for yourself confidently.
Living with PH can bring anxiety, sadness, or frustration
- Talk to professionals like psychologists or counsellors who understand chronic illness
- Join support groups to connect with others who “get it.”
- Practice coping strategies like mindfulness, meditation, and relaxation exercises
- Include your family — they need support too
Caring for your mental health makes you stronger, calmer, and better able to handle challenges.
Small, daily actions add up
- Eat a balanced diet suited to your needs
- Engage in gentle exercise, such as walking, with your doctor’s approval
- Conserve energy — pace yourself, plan rest, and adapt your home if needed
- Use trackers or journals for medications and symptoms
Remember: self-care is not selfish — it’s essential.
You are part of your healthcare team
- Prepare for appointments with a list of concerns
- Know your rights as a patient, and don’t hesitate to ask for explanations
- Use tools like EmPHasis-10 to communicate how you’re doing
- Understand the team roles — specialist, nurse, pharmacist, therapist
- Ask for second opinions if something doesn’t feel right
Partnership leads to better, more personalised care.
Community strengthens resilience
- Join patient associations or local groups
- Share experiences, tips, and encouragement
- Start a group or online forum if none exist in your area
- Become a peer mentor when you feel ready
You are not alone — and you can help others feel less alone too.
Clinical trials can improve future treatments and your own care. Participation is always voluntary and strictly regulated
- Ask your doctor what studies are available Learn what’s involved, including risks and benefits
- Understand your rights and how your safety is protected
- Decide what feels right for you or your child
Taking part in research is a personal choice — being informed helps you feel confident.
Carers are key partners
- Involve them in care conversations and decisions
- Help them access resources through patient associations
- Remind them to look after their own health and well-being
Empowering carers helps everyone cope better.
Practical support protects health and stability
- Ask about insurance, benefits, and financial aid
- Know your workplace rights — flexible schedules, accommodations, or medical leave
- Adjust expectations — pushing yourself too hard can worsen health
- Look into programs to help with medication, travel, or home modifications
Asking for help is a strength, not a weakness.
Some patients feel called to help improve care beyond their own lives
- Join advisory boards or steering groups
- Advise pharmaceutical companies on patient priorities
- Speak at conferences or in media interviews
- Collaborate with researchers, regulators, and healthcare teams
- Take part in campaigns like World PH Day to raise awareness and promote early diagnosis.
Becoming a patient expert takes time — don’t rush. When you’re ready, your experience has unique power no professional can match.
Empowerment is a journey
- Set personal health goals
- Create an action plan — learning, connecting, and caring for yourself
- Build a network — healthcare providers, family, peers
- Track progress — and celebrate your successes!
- Patient organisations: Patient associations are the heart of the PH community. By joining, you can access support — and one day, help shape the future of PH care.They:
- provide information, support, and connection
- organise campaigns like World PH Day (May 5th) to raise awareness and improve early diagnosis
- influence policy and healthcare improvements
- Trusted websites: PHA Europe, PHA US, AfPH, PVRI
- Books, webinars, and courses
- Healthcare teams and mental health professionals
You don’t have to face pulmonary hypertension alone — and you don’t have to do it all at once.
Take small, steady steps. Ask for help when you need it. Stay curious, stay connected, and remember: you have the power to shape your journey, and in doing so, you strengthen the entire PH community.
Are you a patient association?
Help us to reach more patients living with pulmonary hypertension by sharing our guides and leaflets. You can co-brand the resources by adding your logo using these editable Canva templates:
- Editable template: Empower Yourself & Others Guide
- Editable template: Empower Yourself & Others Leaflet
Together, we can build a stronger, more informed pulmonary hypertension community.