Pulmonary Hypertension Association Europe

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Pulmonary Hypertension Association Europe

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.

29/04/2026

🔎On this Global Undiagnosed Day, we’re shining a light on what too often goes unseen: 𝗣𝘂𝗹𝗺𝗼𝗻𝗮𝗿𝘆 𝗛𝘆𝗽𝗲𝗿𝘁𝗲𝗻𝘀𝗶𝗼𝗻 𝗶𝘀 𝘀𝘁𝗶𝗹𝗹 𝗺𝗶𝘀𝘀𝗲𝗱, 𝗺𝗶𝘀𝘂𝗻𝗱𝗲𝗿𝘀𝘁𝗼𝗼𝗱, 𝗮𝗻𝗱 𝗱𝗶𝗮𝗴𝗻𝗼𝘀𝗲𝗱 𝗳𝗮𝗿 𝘁𝗼𝗼 𝗹𝗮𝘁𝗲.

💡Over 40% of patients are initially misdiagnosed (PAH data). Symptoms are subtle and non-specific - often mistaken for asthma, COPD, anxiety or some less serious condition. The result? A delay of 2–3 years and multiple specialist visits before the correct diagnosis.

And the bigger picture is even more alarming:
An estimated 50–70% of people living with PH remain undiagnosed for prolonged periods, with even higher rates in developing regions.

This isn’t just data.📊👥
It’s lost time. Lost stability. Lost chances for early, life-changing treatment. The longer a patient remains misdiagnosed or undiagnosed, the greater the financial burden becomes.

Early diagnosis is not optional - it’s critical.

🔍 Listen when symptoms don’t add up
🔍 Question prolonged “common” diagnoses
🔍 Advocate for referral to PH specialists

Because behind every delayed diagnosis is a person waiting to be seen.

https://pmc.ncbi.nlm.nih.gov/articles/PMC10870813/
https://my.clevelandclinic.org/health/diseases/6530-pulmonary-hypertension-ph
https://bit.ly/3R8Sg1L

28/04/2026

As a proud member of the European Lung Health Group (ELHG), PHAEUROPE recently joined partners to review progress under the campaign and reflect on key advocacy milestones, including the High-level Forum on Lung Health held in February in Burssels, and engagement at the European Health Forum Gastein. Alongside eight fellow lung health association members and other ELHG partners, we contributed to the shared goal of strengthening lung health across Europe.

The discussion highlighted the growing momentum behind a European Lung Health Plan and the urgent need for a more coordinated and ambitious policy response to respiratory diseases - both common and rare. Key priorities included prevention through improved air quality and stronger to***co control, earlier diagnosis supported by primary care screening, equitable access to treatment, and continued investment in research and innovation. Increasing awareness and recognition of rare lung conditions, including pulmonary hypertension, remained central to the conversation.

We also explored upcoming stakeholder consultations, policy opportunities linked to the World Health Assembly and the Global Lung Health Resolution, as well as future campaign activities aimed at keeping lung health high on the European agenda.

By working together across patient associations and collaborating with patient groups representing different diseases, sectors, and countries, we can help ensure lung health remains a European priority - and that no one is left behind.

27/04/2026

🇷🇴 from Romania 🙌👏

Encouraging progress is underway in Romania, where a collaborative effort is helping shape a more structured approach to pulmonary hypertension care.

As part of the AER Project, a dedicated working discussion recently brought together PH specialists, public health experts, and public authorities to contribute to the development of a national package of investigations for the diagnosis and monitoring of people living with pulmonary hypertension.

Importantly, patient representatives were actively involved—sharing real experiences and highlighting the challenges faced throughout the diagnostic journey and ongoing disease monitoring. Their input is helping ensure that future solutions reflect real patient needs.

This joint effort lays the groundwork for more coordinated, accessible, and patient-centered care pathways within the healthcare system.

We are proud to see our member, APHTPRo, contributing to this important initiative and ensuring that patient voices are heard.

👏 A meaningful step forward toward earlier diagnosis and improved care for the PH community in Romania. Bravo!

Asociatia Pacientilor Hipertensivi Pulmonari 💙🙏

25/04/2026

Today is - a moment to bring visibility to Alpha-1 Antitrypsin Deficiency (AATD), a genetic and often overlooked rare disease.

Alpha-1 affects the lungs, liver, and even the skin. It is caused by a lack of the Alpha-1 Antitrypsin (AAT) protein, which normally protects lung tissue from damage. Without it, people may develop symptoms such as shortness of breath, chronic bronchitis, liver disease, and in some cases skin conditions like panniculitis. Lung complications often appear between the ages of 20 and 50 - frequently when the condition has already progressed.

Despite its impact, Alpha-1 remains largely underdiagnosed. Up to 90% of people living with the condition are unaware they have it, and around 1 in 25 people of European descent carry the gene.

Early diagnosis can change lives. A simple test can help identify the condition, guide care, and prevent further damage.

Importantly, Alpha-1 can also lead to serious complications such as emphysema and secondary pulmonary hypertension (PH). As lung damage progresses and oxygen levels drop, blood vessels in the lungs constrict, increasing pressure and placing strain on the heart.

On this day, we highlight:
💜 the importance of awareness and testing
💜 the need for earlier diagnosis
💜 equitable access to care, treatment, and specialist support
💜 and stronger recognition of related conditions like PH

Together, we can ensure that fewer people remain undiagnosed and that every patient has access to the care they need.

24/04/2026

from North Macedonia 👏🇲🇰

Pulmonary arterial hypertension is more common in women, and seeing strong, compassionate, and committed women dedicating their strength—and their breath—to others living with PAH is always inspiring.

With the arrival of spring and a season filled with races and marathons, Valentina Uzunova and Stanimirka Lola Tasevska from North Macedonia continue to inspire by running and getting breathless for the PH community, race after race. Taking on the Vodno–Matka trail marathon, with its demanding 30 km course, is a remarkable achievement. Seeing the Get Breathless for PH flag at the finish line stands as a powerful symbol for the entire PH community.

Thank you to these incredible women, and to the North Macedonian PH Association for their continued commitment — Pulmonary Hypertension r. Macedonia Moment Plus.

Pulmonary Hypertension r.Macedonia Moment Plus 🙌
https://www.facebook.com/share/p/1CJ9LoqgQK/

23/04/2026

⌛🫁One year ago, a major step forward for global lung health was made.

In May 2025, the World Health Organization adopted a landmark resolution on integrated lung health at the World Health Assembly. It commits countries to strengthen prevention, early diagnosis, access to treatment, and long-term care.

For the pulmonary hypertension community, this matters. Even though PH is not explicitly mentioned, the resolution directly reflects key challenges such as delayed diagnosis, limited awareness, and unequal access to specialised care.

It also creates important opportunities. Stronger primary care and awareness can support earlier diagnosis. Better knowledge among healthcare professionals can improve referral pathways. Increased focus on access can expand availability of diagnostics and treatment. More integrated approaches can strengthen long-term care. There is also greater potential to reduce inequalities across regions.

These priorities closely align with PHAEurope’s Call to Action on Unmet Needs of Patients with PH, presented at the European Parliament, which highlights the need for earlier diagnosis, better referral pathways, improved access to specialised centres, and equitable treatment across countries. They also reflect the findings of the Pulmonary Vascular Research Institute Global Patient Survey (PHGPS), which identified similar gaps and resulted in ten calls to action focused on awareness, access, and patient-centred care.

One year on, this resolution is not just an international commitment. It is a practical advocacy tool to engage policymakers and ensure PH is included in national strategies.

📝💪The opportunity is clear. Now is the time to turn commitment into real progress for people living with PH.

👉 Full resolution:https://apps.who.int/gb/ebwha/pdf_files/WHA78/A78_R5-en.pdf

👉 Read more: https://www.phaeurope.org/news/a-global-lung-health-resolution-what-it-means-for-the-ph-community/

22/04/2026

Happy World Earth Day! 🌍 💚

Let’s celebrate our planet by protecting its beauty, preserving its resources, and committing to a more sustainable future.

At PHAEUROPE, we also highlight the importance of clean air as a vital resource - especially for people living with respiratory and lung conditions.🫁

What we do today is an investment in tomorrow, and a foundation we leave for future generations. Every life begins with a healthy Earth.

➡️Discover what PHAEUROPE is doing for people living with pulmonary hypertension around the world: phaeurope.org

21/04/2026

𝟭𝟱 𝗱𝗮𝘆𝘀 𝘂𝗻𝘁𝗶𝗹 𝗪𝗼𝗿𝗹𝗱 𝗣𝗛 𝗗𝗮𝘆 𝟮𝟬𝟮𝟲! 🫁🌍

Hope in Every Trial - this year’s theme of World Pulmonary Hypertension Day, a global event spearheaded by PHAEUROPE shines a light on one of the most powerful drivers of progress in PH care: clinical trials.

Every treatment available today exists because of clinical trials. They are where science meets lived experience - where new therapies are tested, refined, and brought closer to the people who need them most. For many patients, participation is not only about accessing innovative medicine, but about contributing to something bigger: a future with better options, earlier diagnoses, and improved quality of life and ultimately a cure.

Through patient testimonials, we see just how powerful that contribution can be. Patients speak about hope, purpose, and the meaning of knowing their journey may help others. But these stories also reveal something equally important. They highlight the barriers and challenges that still exist.

· Not all patients have access to clinical trials.
· Not all regions have specialized centers or reliable information.
· Not all patients are equally represented in research.

For many, participation depends on geography, awareness, financial means, or proximity to expert care. Others face uncertainty simply because information is limited or difficult to access. As a result, important voices remain unheard, and opportunities for progress are not shared equally.

Recognizing these gaps is essential. Because advancing PH care is not only about developing new therapies - it is about ensuring that research is inclusive, accessible, and representative of all patients.

Clinical trials carry hope - and everyone deserves to share in that hope.
This year’s campaign reminds us that continued effort is needed, along with stronger collaboration and greater equity.

💜 Support WPHD 2026. Support every patient voice. 💜

17/04/2026

from Italy 🇮🇹 AIPI – Associazione Ipertensione Polmonare Italiana

At the Solo Women Run in Cagliari, a powerful message of awareness and solidarity took to the streets as over 16,000 women came together to celebrate women’s health.

Among the sea of pink, a striking “blue wave” stood out. For the second year in a row, Marika Gattus, long-standing board member of AIPI, led the group “Dona un Respiro” (“Donate a Breath”), bringing together around 230 women to raise awareness of pulmonary arterial hypertension (PAH).

With blue lips and balloons lifted high, participants highlighted the reality of living with a rare and often invisible disease—symbolizing both the challenges of PAH and the importance of visibility, understanding, and support. Importantly, PAH affects women more frequently than men, making awareness in female-centered spaces and events especially impactful.
More than just a solidarity event, the Solo Women Run reflects unity, strength, and resilience - bringing women and communities together to celebrate life, remember those we fight for, and give a voice to conditions that too often remain unseen.

👏 Thank you to AIPI and all participants for making pulmonary arterial hypertension visible.

AIPI Associazione Ipertensione Polmonare Italiana 🙌
https://www.facebook.com/share/p/1Am2dXRaPr/

16/04/2026

📖 PHAEurope Mariposa Journal – APHP (Portugal)
Mariposa Highlights | Pages 90–91

The APHP – Portuguese Pulmonary Hypertension Association has further strengthened its role within the PH community in Portugal through active institutional engagement, participation in scientific and patient-centred events, and new initiatives focused on empowering patients and caregivers.

💙 A strong focus has been placed on capacity building, collaboration, and ensuring the patient voice is represented in healthcare and advocacy spaces.

A key highlight includes APHP’s participation in the “Patient Association Campus – Unlocking Healthcare” by Johnson & Johnson, where PH patient and PHAEurope fellow Dulce Barbosa contributed to discussions on strengthening the role of patient organisations in more responsive healthcare systems.

APHP has also launched regular meetings with APHP Ambassadors – patients and caregivers who actively support the association by co-organising events, proposing initiatives, and fostering peer support and community engagement.

✨ PHAEurope warmly congratulates the APHP team behind the Ambassadors project, recognizing it as an inspiring example of good practice and encouraging similar models across member PH patient associations to further strengthen patient empowerment and community-driven advocacy in Europe.

📥 Read more in the latest Mariposa Journal: https://bit.ly/4sCLOgH

15/04/2026

✨Two years ago, PHAEurope launched the BelAir Center — a virtual platform for the PH community, bringing together knowledge, expertise, and support for patients and stakeholders alike. Among its many resources, one space stands out: PH Patient Art Gallery.

Today, on World Art Day, we celebrate the powerful creativity of people living with pulmonary hypertension. Through color, form, and imagination, they transform struggle into expression, turning breathlessness into beauty, and limitation into meaning. For many, art is more than creation. It is a world without limits. It is strength. It is a way to transcend the weight of a life-changing diagnosis. This art is not just an expression. It is resilience. It is courage. It is a quiet, profound triumph of life. 💙 Today we celebrate creativity that inspires awareness.

→Join the PH community at belaircenter.info and explore the PH Art Gallery.

🎨Artwork by: Rita Rodrigues, PH patient from Portugal

🌍

🙏💙

14/04/2026

from Spain 🇪🇸 🙌👏

In Parla, the pulmonary hypertension community came together for a meaningful day of awareness, connection, and learning. At the local Health Days, Fundación Contra la Hipertensión Pulmonar (FCHP) joined forces with primary care professionals and Hospital Universitario Infanta Cristina to shine a light on PH and the importance of early understanding and community support.

The event brought together patients, healthcare professionals, and local stakeholders in a shared effort to strengthen awareness and collaboration. With the support of the Mayor of Parla and the Councillor for Health, the initiative highlighted how united local action can make a real difference.

A heartfelt thank you to all involved for making this important moment possible 💙Congratulations to FCHP on their continuous dedication to the PH patients in Spain.

Fundación Contra la Hipertensión Pulmonar 🙌

Adresse

Wilhelmstrasse 19
Wien
1120

Telefon

+4314023725

Webseite

http://www.phaeurope.org/

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