Pulmonary Hypertension Association Europe

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.

PHAEurope was pleased to be represented by Hall Skaara at the 4th EU-PFF Patient Summit in Brussels, marking the 10th an...
02/06/2026

PHAEurope was pleased to be represented by Hall Skaara at the 4th EU-PFF Patient Summit in Brussels, marking the 10th anniversary of the European Pulmonary Fibrosis Federation (EU-PFF).

Prior to the summit, Hall also participated in the European Lung Health Group (ELHG) face-to-face meeting, where both EU-PFF and PHAEurope (as ELHG members) contribute to strengthening collaboration across respiratory and pulmonary vascular diseases.

The summit highlighted many shared challenges faced by the pulmonary fibrosis (PF) and pulmonary hypertension (PH) communities, including delayed diagnosis, access to specialist care, patient empowerment, and meaningful involvement in research and policy development. As pulmonary fibrosis can lead to Group 3 PH, closer cooperation between our communities is particularly important.

Discussions also focused on treatment innovation. While only two therapies are currently approved for PF, a growing number of clinical trials are exploring new approaches, some of which may have relevance for both PF and PH patients in the future. Sessions on genetics, hereditary disease, and family support further reinforced the importance of holistic, patient-centred care.

The summit provided valuable opportunities to exchange experiences, identify common priorities, and strengthen partnerships across Europe. We thank EU-PFF for an inspiring event and look forward to continued collaboration in advancing care, research, and advocacy for patients living with PF and PH.

➡Read full article here: https://www.phaeurope.org/news/eu-pff-summit-report/



European Pulmonary Fibrosis Federation

💜 Thank you to the global PH community and members of PHAEUROPE🙏World Pulmonary Hypertension Day is a global initiative ...
01/06/2026

💜 Thank you to the global PH community and members of PHAEUROPE🙏

World Pulmonary Hypertension Day is a global initiative uniting PH patients, associations, organisations, and people around the world. This day is dedicated to the global PH community, and PHAEUROPE is grateful to individuals, PH patients, and PHighters for standing alongside us during World PH Day 2026 and for sharing experiences that move us forward. 💙🙏

PHAEUROPE remains firmly committed to its mission of supporting PH associations and empowering patients across the globe. 💪

➡www.worldphday.org
➡www.phaeurope.org
➡www.belaircenter.info

💜 Thank You to our industry partners and sponsors🙏The success of World Pulmonary Hypertension Day 2026 would not have be...
01/06/2026

💜 Thank You to our industry partners and sponsors🙏

The success of World Pulmonary Hypertension Day 2026 would not have been possible without the generous support of our sponsors and industry partners. Your commitment to supporting our patient association drives progress, and your investment in clinical trials brings us closer to new possibilities and renewed hope.

Your partnership helps unite patients, caregivers, and healthcare professionals—fostering knowledge, strengthening connections, and inspiring hope across the pulmonary hypertension community.

Hope is built step by step, trial by trial.

➡www.worldphday.org
➡www.phaeurope.org
➡www.belaircenter.info

A heartfelt thank you to everyone who came together to raise awareness for pulmonary hypertension on .To every PH patie...
29/05/2026

A heartfelt thank you to everyone who came together to raise awareness for pulmonary hypertension on .

To every PH patient around the world who shared their story of participating in clinical trials, and to those advocating for more inclusive and accessible research, clinical trials and studies - your voices shaped this campaign and gave it meaning.

Your support is a powerful force, amplifying the voice of the global PH community.
Your voice gives meaning to this years slogan – Hope in Every Trials, as it is you who transcend trials by being courageous and participating in clinical trials and bringing hope to all.

By sharing your experiences, you are doing more than telling your story - you are guiding others. You are helping fellow patients feel less alone, more informed, and more empowered to take part in their own journey.

Because every story shared is a step toward better quality of life, better outcomes,
and ultimately - a cure.

Your experiences inspire others to take part, to ask questions, and to become part of progress.

Thank you for reminding us that progress depends on people, that science needs courage, and that hope is built step by step, trial by trial.

➡www.worldphday.org
➡www.phaeurope.org
➡www.belaircenter.info

Huang Huan │ China "My name is Huang Huan. I am from China and living with pulmonary hypertension.For many patients here...
28/05/2026

Huang Huan │ China


"My name is Huang Huan. I am from China and living with pulmonary hypertension.

For many patients here, access to clear and reliable information about clinical trials is still limited. This becomes even more difficult for those living in rural areas or far from specialized pulmonary hypertension centers, where opportunities for timely guidance and structured support are not always available. Because of this, many patients are not fully aware of what clinical research involves, or what options they may have.

There is also another layer of difficulty when it comes to international clinical trials. Some studies require patients to already be on stable background therapy at specific doses before they can be included. In everyday clinical practice, however, treatment approaches may differ, and medications are sometimes used at lower doses. This can unintentionally exclude patients who might otherwise be eligible to participate.

At the same time, the experience of patients has not always been fully reflected in how trials are designed. Study materials and follow-up questionnaires are often not adapted to local language nuances or cultural context, which can make it harder for patients to fully engage or express their experience.

Despite these challenges, I believe there is real value in bringing patient perspectives into focus. When patients are informed, supported, and included in a way that reflects their reality, clinical research becomes more accessible and more meaningful for everyone involved.

I am grateful for the opportunity to share this perspective and to help highlight the situation for patients in China. I hope it contributes to greater understanding and more inclusive approaches in future research."

— Huang Huan, China 💙

➡www.worldphday.org
➡www.phaeurope.org
➡www.belaircenter.info

Katiusca │ Venezuela “My story is one of resilience - but resilience should not have to fill in all the gaps.”"My name i...
27/05/2026

Katiusca │ Venezuela


“My story is one of resilience - but resilience should not have to fill in all the gaps.”

"My name is Katiusca Salinas. I am 56 years old. I am a professional, a daughter, sister, wife, and mother of two children who are now adults and my greatest pride. Since 2017, my life has also been marked by pulmonary hypertension.

It all began one December, when an unexplained exhaustion took over my body. It was not ordinary tiredness - I could barely take a step. I had to leave my job because even the simplest daily responsibilities became impossible. At first, I was told it might be depression, but my condition continued to worsen.

Everything changed when a cardiologist looked at me and said clearly that what I was experiencing was a pulmonary hypertension crisis. In my confusion, I tried to correct her, thinking it was related to blood pressure, until I was referred to a specialist and underwent further tests. That is when idiopathic pulmonary hypertension was confirmed.

I started treatment, and for the first time in a long while, I felt my breathing open again. There was a sense of relief I had almost forgotten. But what followed was something I had not expected: that improvement was never stable, because access to therapy itself became unstable.

Over time, the reality in Venezuela became very clear to me and to many others like me. Treatments that once formed the backbone of care began to disappear or arrive inconsistently. Combination therapy, which many patients elsewhere consider standard, became something we could only hear about, not actually experience. We were often left with only fragments of what a full treatment plan should be.

There were moments when medication was simply not available, and other times when it depended on long waiting periods or uncertain supply channels. Each time, you learn to adjust your life around what is or is not there, rather than around what you actually need.

In Venezuela, living with pulmonary hypertension means living with interruptions that shape everything- your energy, your plans, your independence. Clinical trials and studies are also not an option here, which makes it even harder to access newer therapies that could offer stability.

Still, I hold on to the periods when treatment was available, because they showed me what is possible. They are proof that breathing easier is not an abstract idea - it is something real when care is continuous.

My message is simple: we are not statistics. We are people trying to keep our lives together under very unstable conditions. We need continuity, we need access, and we need the possibility to be part of progress, not outside of it.

My story is one of resilience - but resilience should not have to fill in all the gaps."

— Katiusca Salinas, Venezuela 💙

➡www.worldphday.org
➡www.phaeurope.org
➡www.belaircenter.info

Dušanka │ Serbia “Always consider all available paths toward a better quality of life. Clinical trials saved my life”"My...
26/05/2026

Dušanka │ Serbia


“Always consider all available paths toward a better quality of life. Clinical trials saved my life”

"My name is Dušanka Radojičić. I am 70 years old and I live in Serbia.

My journey with pulmonary hypertension changed direction after I collapsed in the street and suddenly found myself in a situation where my body was no longer responding the way it used to, and my condition was deteriorating. That moment led to further examinations and, eventually, I was invited to take part in a clinical trial involving a newer group of PH therapy - something that promised a new chance at life. The opportunity alone already felt like a meaningful step forward.

What followed required time and commitment. For six months, my days were often spent between hospital visits, diagnostics, and blood tests - sometimes lasting six or seven hours. It was demanding, both physically and in terms of endurance and patience.

During that period, I was also given different perspectives from medical professionals around me, some suggesting I carefully consider my options before proceeding. Still, I felt calm in my decision. Reassured by other experts I made an informed decision considering the alternative. Something in me said to continue, step by step, and I did.

Today, I feel significantly better. In a way I never thought possible, my condition has improved to the point where daily life feels lighter and more open again. It feels as though pulmonary hypertension no longer defines every part of my day.

What I want to share with others is simple: I would choose this path again. It has made a meaningful difference in my life.

Clinical trials open doors to new possibilities. They provide close monitoring, structured care, and the chance to contribute to progress while receiving treatment that may not otherwise be available on top od your regular therapy. I encourage others to stay open, to ask questions, and to consider all available paths toward a better quality of life.

For me, it changed everything."

— Dušanka Radojičić, Serbia 💙

➡www.worldphday.org
➡www.phaeurope.org
➡www.belaircenter.info

Vera │ Bosnia and Herzegovina "My name is Vera Hodžić. I am 64 years old, and I have been living with pulmonary hyperten...
26/05/2026

Vera │ Bosnia and Herzegovina


"My name is Vera Hodžić. I am 64 years old, and I have been living with pulmonary hypertension since 2013. From the moment I was diagnosed, I was faced with the reality that in Bosnia and Herzegovina, I had to purchase extremely expensive medications myself. That is when my fight began - not only for myself, but for all PH patients in my country.

I founded the Association of Pulmonary Hypertension Patients “DAH” (Breath) in Bosnia and Herzegovina, and since then, I have been fighting a battle that often feels like a battle with windmills. Over the past 13 years, we have brought together around 100 patients. Sadly, some of them are no longer with us, having never had the chance to access better treatment, benefits of clinical trials, or improved care.

We cannot bring back the lives lost, but we can continue to fight for better access to research. In Bosnia and Herzegovina, opportunities for clinical trials have been extremely limited. Our patients had the chance to participate in studies more than a decade ago, and since then, very little has changed. Meanwhile, neighboring countries have opened doors to innovative therapies, sometimes even for our patients. We are grateful for these opportunities, but for someone living with PH, traveling abroad for examinations, detailed test, and treatment is exhausting, difficult, and financially demanding.

I believe that change is possible. I hope that stronger collaboration between institutions, doctors, and the pharmaceutical community will bring clinical trials to Bosnia and Herzegovina. Our patients deserve to be recognized and supported equally, just like all PH patients across Europe and the world. The need exists. The patients exist. The treatments exist. What we need is organization, understanding, empathy, and the will to act.

My message is simple: we must not be left behind. Every patient deserves a chance for a better and longer life through access to research and new therapies.

My fight will last until my last breath - hope dies last."

— Vera Hodžić, Bosnia and Herzegovina 💙

➡www.worldphday.org
➡www.phaeurope.org
➡www.belaircenter.info

Manuela │ Austria "I was diagnosed with rheumatism in 2009, more specifically with scleroderma and Sjögren’s syndrome.At...
25/05/2026

Manuela │ Austria


"I was diagnosed with rheumatism in 2009, more specifically with scleroderma and Sjögren’s syndrome.

At the beginning of 2016, my health began to deteriorate significantly. My shortness of breath became increasingly severe and was accompanied by physical weakness. After a very long hospital stay, I was eventually referred to the pulmonary outpatient clinic at the University Hospital in Graz. There, following a right heart catheterization, I was diagnosed with pulmonary arterial hypertension.

I was then prescribed an approved medication (combination therapy) and was also enrolled in a clinical study. At first, I was very skeptical – it was a new medication that was not yet widely used and for which there was not yet extensive long-term experience. Nevertheless, I decided to stay positive and give it a try.

After some time, I began to notice initial improvements, and eventually, it became clear that the medication was very effective. I continue to take it to this day and now receive it regularly on prescription.

At present, I am doing very well, and I am incredibly grateful for this development and outcome. I am especially thankful that I was accepted into the study at that time.

My sincere thanks go to the entire pulmonology team in Graz, who have accompanied and supported me on this journey - and continue to do so."

— Manuela, Austria 💙

➡www.worldphday.org
➡www.phaeurope.org
➡www.belaircenter.info

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