Pulmonary Hypertension Association Europe

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Pulmonary Hypertension Association Europe

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PHAEUROPE is the European umbrella organization for pulmonary hypertension. PHAEUROPE has 40 member associations from 35 European countries.

It was founded in 2003 and is registered in Vienna, Austria, as an international non-profit organization. PHA Europe is the European umbrella organization for pulmonary hypertension. PHA Europe has 40 member associations from 33 European countries.

15/10/2026

🌍🫁 World Chronic Cough Day 2026 | Let's Talk Cough

What happens when a cough simply won't go away?

An estimated 9.6% of adults worldwide — nearly 1 in 10 people — live with chronic cough. Yet despite its prevalence, this condition remains widely misunderstood, underestimated, and too often dismissed.

🗣️ On 15 October, World Chronic Cough Day, PHAEUROPE joins the Global Allergy & Airways Patient Platform (GAAPP) in raising awareness under this year's theme, “Let's Talk Cough.”

⏳ Defined in adults as a cough lasting more than eight weeks, chronic cough can be far more than an occasional irritation. It can disrupt sleep, interfere with everyday activities, affect social relationships, and take a considerable toll on emotional well-being and quality of life.

🔎 Its causes are diverse, ranging from asthma, acid reflux, and chronic sinus conditions to medication side effects and underlying respiratory diseases or heart failure. In some people, coughing persists even after potential causes have been addressed, becoming a condition in its own right, with treatment options that remain limited.

💙 For people living with pulmonary hypertension (PH), a persistent cough deserves particular attention. It may accompany breathlessness, fatigue, or chest discomfort and can sometimes be associated with underlying lung conditions. Understanding its cause is essential to ensuring appropriate care.

🤝Through this year's campaign, we stand alongside the global patient community in calling for greater recognition, earlier diagnosis, continued research, and better access to effective treatments.

A persistent cough should never mean a persistent struggle to be heard. Let's talk cough — and make every patient's voice count.

🔗 Learn more: https://chroniccough.gaapp.org/

Global Allergy & Airways Patient Platform🙏

14/10/2026

🧭 October is Health Literacy Month

Living with pulmonary hypertension means navigating a complex journey. Understanding your diagnosis, your treatment options, and the questions to ask your care team can change the direction of that journey. Health literacy isn’t just about reading medical information. It’s about feeling confident to:

✔️ Understand what PH is and how it affects you
✔️ Ask questions and be heard at every appointment
✔️ Make informed decisions about your care
✔️ Recognize symptoms early, because early diagnosis saves lives

At PHAEUROPE & Global, we believe that when patients and families are informed, they are empowered. Knowledge is our compass, and no one should have to find the way alone.

📖 Explore trusted, patient-friendly resources on our website and through our member associations. ➡phaeurope.org

💬 What helped you better understand your condition? Share your tips below, your experience can guide someone else. Patient associations play a vital role in improving patients’ health literacy and empowering them to make informed decisions about their health.

13/10/2026

📢 Understanding Clinical Trials: Episodes 7 & 8

PVRI’s 13-part Understanding Clinical Trials series, created by the IDDI Patient Engagement and Empowerment Workstream, continues with two new episodes exploring the practical realities of participating in a clinical trial and what happens after the study ends.

📅 Episode 7: Taking part in a trial: what to expect day-to-day

Presented by Colleen Brunetti, PHA USA, this episode explores how participating in a clinical trial may affect patients’ everyday lives. From initial screening and regular study visits to treatment appointments, health checks, travel arrangements, and possible financial support, it helps patients understand what participation may involve and how to prepare.

🔎 Episode 8: After the trial: results, follow-up, and your data

Presented by Luz Osorio, Sociedad Latina de Hipertension Pulmonar, this episode explains what happens once trial treatment ends. It covers follow-up care, how study results are analysed and communicated, how participants’ personal data is protected, and whether access to treatment may continue after the study.

At PHAEUROPE, we are pleased to share these valuable resources, helping patients and families navigate the entire clinical trial journey with greater knowledge, confidence, and realistic expectations. Understanding what happens before, during, and after a trial is an important part of making informed decisions about research participation.

▶️ Watch Episodes 7 & 8 and explore the full series:
https://pvrinstitute.org/PH-patient-resources/understanding-clinical-trials

Pulmonary Vascular Research Institute (PVRI)

12/10/2026

🏆 Another from Poland!

We are delighted to celebrate a remarkable achievement by our Polish member association, Polskie Stowarzyszenie Osób z Nadciśnieniem Płucnym i Ich Przyjaciół (PHA Poland), which has received the prestigious Lider Kraju 2025 (National Leader) award! 🎉

💙 After a particularly challenging year of hard work and dedication, this recognition is a well-deserved acknowledgement of their outstanding achievements, commitment, and contribution to the PH community.

👏 Congratulations to the entire team! At PHAEUROPE & Global, we are proud to celebrate your success and the difference you continue to make for people living with pulmonary hypertension.

12/10/2026

🇵🇱💙 from Poland: A Series of Activities Bringing the PH Community Together!

The Polish pulmonary hypertension community continues to demonstrate its commitment to patient education, advocacy, and collaboration through a series of meaningful activities!

🫁 Patient Meeting in Lublin

Patients gathered in Lublin for an informative and engaging meeting featuring cardiologist Dr. Bartosz Kijewski, who delivered a comprehensive presentation followed by lively discussions and opportunities for participants to ask questions.

☕ Beyond the educational sessions, coffee and lunch breaks provided valuable opportunities to connect, exchange experiences, and strengthen the sense of community.

🤝 Participation in the Central European Summit 2026

Representatives of the Polish PH patient association also participated in the Prevention & Intervention – Central European Summit 2026, an important conference bringing together stakeholders in healthcare.

Their participation provided another valuable opportunity to strengthen patient representation, encourage collaboration, and highlight the importance of including the patient perspective in healthcare discussions.

💙 At PHAEUROPE & Global, we are delighted to see our Polish colleagues actively promoting knowledge, strengthening connections, and ensuring that the voices of people living with pulmonary hypertension are heard.

👏 Congratulations to everyone involved in these inspiring activities!

Polskie Stowarzyszenie Osób z Nadciśnieniem Płucnym i Ich Przyjaciół

10/10/2026

🧠 What stands between a happy face and a sad face? 😊😔

For many people living with pulmonary hypertension (PH), the answer is far more complex than it might seem.

🫁 Breathlessness, overwhelming fatigue, physical limitations, demanding treatments, and the uncertainty of living with a chronic condition can affect much more than physical health. They can also take a significant toll on emotional well-being, independence, relationships, and quality of life.

💔 Behind the physical symptoms, there is often an invisible emotional burden. Research suggests that approximately 37% of people living with PH experience anxiety, while 28% experience depression.

These figures remind us that the challenges of PH extend far beyond the heart and lungs. Fear, frustration, loneliness, and uncertainty can become part of everyday life, even when they remain invisible to others.

🌍 On World Mental Health Day, PHAEUROPE stands with everyone facing these challenges. Mental health deserves the same attention, understanding, and care as physical health.

💙 Living with PH is not just about managing symptoms. It is also about preserving hope, dignity, connection, and quality of life.

Let's listen without judgement, speak openly about mental health, and ensure that no one has to face the emotional challenges of PH alone.

Because caring for the heart and lungs also means caring for the mind. 🫀🫁🧠

10/10/2026

Sharing lives. Sharing hope. Giving life.💙

Today, on the European Day for Organ, Tissue and Cell Donation, we join people across Europe in celebrating the power of generosity and the gift of life.

Under this year's theme, “Sharing lives,” we recognise how organ, tissue and cell donation can save lives, restore health and offer new beginnings.

🫁❤️ For people living with advanced pulmonary hypertension (PH), lung or heart-lung transplantation can offer a second chance at life. Heart transplantation can also be life-saving for people with severe heart disease, while other forms of donation bring renewed hope and possibilities for countless others.

At PHAEUROPE & Global, we honour donors and their families, stand with everyone awaiting a transplant, and recognise the healthcare professionals who make these life-changing treatments possible.

🤝 Sharing lives starts with a conversation. Talk to your loved ones about donation, make your wishes known, and help us spread awareness.

Because the greatest gift we can share is the gift of life. 💝

08/10/2026

🦋 The new Summer 2026 edition of Mariposa Journal is now available!

Dedicated to World Pulmonary Hypertension Day 2026, this issue looks back at this year’s WPHD theme, “Hope in Every Trial,” and the people, organisations and ideas helping shape the future of pulmonary hypertension care.

💙 Inside this edition:
▪️ Highlights from our World PH Day campaign, which reached 4.5 million people across Facebook and Instagram
▪️ 19 patient testimonials and more than 20 educational infographics focused on PH, clinical trials, innovation and patient involvement
▪️ Contributions from more than 45 PH organisations and patient association worldwide
▪️ Insights from our World PH Day webinar exploring clinical trials from academic and industry perspectives
▪️ Inspiring activities from our member associations across Europe and beyond — from awareness events and fundraising initiatives to patient support, education and advocacy

This year’s campaign reminded us that patients are not only participants in research — they are partners in innovation, and their experiences are essential in shaping the future of PH care.

Thank you to all our member associations, volunteers, patients, partners and supporters who continue to bring visibility, knowledge and hope to the PH community. 💙

📖 Read the new digital edition of Mariposa Journal and discover the stories behind World PH Day 2026: https://bit.ly/477cj5C

➡More info: www.phaeurope.org

07/10/2026

📢 Understanding Clinical Trials: Episodes 5 & 6

PVRI’s 13-part Understanding Clinical Trials series, created by the IDDI Patient Engagement and Empowerment Workstream, continues with two episodes focusing on patients’ rights and the methods used to make clinical trial results fair and reliable.

💬 Episode 5: Your rights and informed consent

Presented by Anca Berendea, PH Romania, this episode explains informed consent and the rights patients have before and during a clinical trial. These include asking questions, taking time to decide, joining only by choice, and withdrawing at any time while continuing to receive regular care.

🔎 Episode 6: How clinical trials work: placebos, randomisation, and study design

Presented by Jamie Myrah, PHA Canada, this episode explores randomisation, placebos, blinding, and study groups. It explains how these methods support reliable research and why patients still receive appropriate care throughout the process.

At PHAEUROPE, we are pleased to share these resources to help patients and families understand their rights, ask informed questions, and feel more confident when considering clinical trial participation.

▶️ Watch Episodes 5 & 6 and explore the full series:
https://pvrinstitute.org/PH-patient-resources/understanding-clinical-trials

Pulmonary Vascular Research Institute (PVRI)

06/10/2026

from Croatia 👏🇭🇷 💙

At Zagreb’s Jarun Lake, the association Plava krila (Blue Wings) joined the third Mnogi za rijetke (“Many for Rare Diseases”) event to raise awareness of rare diseases and life with pulmonary hypertension.

Visitors were invited to try a simple breathing challenge: with their noses closed, they breathed through a straw while doing a few squats. The activity offered a glimpse of how everyday physical effort can feel for someone living with PH. Children could also decorate pictures of lungs and meet Kasper, the blue-lipped bear from a special storybook.

Plava krila shared the event with long-standing partners, including the Zagreb Red Cross, the Croatian House of Breathing, the Croatian Thoracic Society and medical staff from Jordanovac. Together, they offered CPR and AED education, oxygen saturation checks and spirometry.

Thank you to Plava krila, its partners and volunteers for helping make rare diseases more visible and bringing people together in support of everyone who faces a challenge with every breath. 💙🫁

When many come together for rare, every breath grows a little louder.

PH "Plava krila "Croatia 👏

Adresse

Wilhelmstrasse 19
Wien
1120

Telefon

+4314023725

Website

http://www.phaeurope.org/

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