Pulmonary Hypertension Association Europe, Wilhelmstrasse 19, Wien (2025)

22/10/2025

from North Macedonia 🇲🇰 – PH Association Moment Plus

Pulmonary Hypertension associations continue their long-standing tradition of raising awareness at international marathons and sporting events. The racing team and members of the PH Association Moment Plus from North Macedonia once again got breathless for PH at two major marathons - one in Skopje, North Macedonia, and another in Sofia, Bulgaria.

Medals won at both Wizz Air Marathons were dedicated to all those who are running their own life marathons and dreaming of the finish line.

💙 The pulmonary hypertension community thrives on the compassion of those willing to lose their breath for a noble cause.

Bravo Moment Plus, and bravo to all the compassionate racers! 👏💙

Pulmonary Hypertension r.Macedonia Moment Plus 🙌👏💪

21/10/2025

🌟 Without You, There Would Be No Us 💙
Today, we share the inspiring story of Michal from the Czech Republic, whose journey reflects the power of perseverance, gratitude, and compassionate care.

“I know how hard it is to fight an illness that cannot be seen from the outside world,” Michal begins his story mirroring those of so many PH patients. “For a long time, I had no idea what was happening to me. I hope my experience helps others who feel as lost as I once did.”

His first symptoms appeared in 2018 during a handball tournament. Once an active sportsman, Michal suddenly found himself unable to catch his breath. Fatigue, chest pain, and shortness of breath became constant companions, yet medical tests showed nothing unusual.
“It was mentally exhausting. It felt like no one believed me,” he recalls. “But deep down, I knew something was wrong.”

The turning point came when he was admitted to the Cardiology Department at the Faculty Hospital in Brno. After thorough examinations, and thanks to the genuine understanding and compassion of the hospital’s staff and doctors, as well as a performed cardiac catheterization, he finally received the long-awaited diagnosis.

The doctor told him: “Your lungs and heart are under extreme stress. This is pulmonary hypertension combined with cardiomyopathy. We have to act now.”

“I felt both shocked and relieved,” Michal says. “Finally, my condition had a name and I knew it wasn’t just in my head.”

He began treatment immediately, first in Brno and later at the Faculty Hospital in Olomouc, where he continues to be carefully monitored. Medication, lifestyle changes, and learning to listen to his body became part of everyday life.
“I had to slow down and live differently, but today I can still enjoy the things I love. Every day is a new beginning and I am grateful for it.”

💙 Gratitude
Michal extends his heartfelt thanks to the cardiology teams in Brno and Olomouc for their expertise, commitment, and genuine humanity. “Their professionalism saved my health, their compassion saved my spirit.”

He also expresses deep appreciation for his family, who stood by him through the most difficult moments, offering patience, strength, and unconditional love.
“And I thank myself for not giving up when life got hard,” he adds.

“I might have received the diagnosis, but not the strength to keep going. Without their compassion, I might have survived the illness but lost myself along the way. 💙 My message to others is simple yet powerful: trust your body, keep searching for answers, fight for yourself, and never let anyone dismiss your pain. Sometimes you need others to believe in you, and sometimes, you need to be the one who believes in yourself.”

Thank you, Michal, for sharing your story and reminding us that recovery is not only a medical journey but also a human one, made possible by those who care. Your story is a reminder that behind every patient stands a network of compassion, and that without them, there would truly be no us. 💙

Sdružení pacientů s plicní hypertenzí

20/10/2025

from Slovenia

Raising Awareness of Pulmonary Hypertension at the 27th Fajdiga Days 🇸🇮💙🌍

In Slovenia, awareness of pulmonary hypertension (PH) continues to grow thanks to the dedicated work of the Pulmonary Hypertension Association of Slovenia (PHA Slovenia).

This weekend, in the beautiful Alpine town of Kranjska Gora, the association took part in the 27th Fajdiga Days - an annual medical gathering bringing together doctors, medical students, family medicine residents, and other healthcare professionals to exchange knowledge on developments in primary care.

💙 Although pulmonary hypertension is not among the most common conditions encountered in family practice, it is often family doctors who first meet patients showing early, non-specific symptoms such as chronic fatigue, shortness of breath, dizziness, or fainting. Recognizing these warning signs can be key to earlier diagnosis and treatment.

To raise awareness among participants, PHA Slovenia created an engaging and memorable experience: through a modified six-minute test—this time performed on stationary bikes instead of walking—attendees were able to feel firsthand what it’s like to live with pulmonary hypertension and to understand the challenges PH patients face every day.

This creative initiative encouraged healthcare professionals to “Think PH” and to remember that in cases where no other known cause explains recurring symptoms, referring patients for PH testing can make a life-changing difference.

👏 PHAEurope warmly congratulates PHA Slovenia for this meaningful awareness activity and for their continued efforts to bring pulmonary hypertension to the attention of the broader medical community. This represents a key aspect of the mission of every PH patient association.

Društvo za pljučno hipertenzijo Slovenije 🙌💪

💜

16/10/2025

This November, marking Pulmonary Hypertension Awareness Month, we reflect on the importance of access to care, treatments, and clinical trials. For many, these represent the very air that keeps PH patients breathing. Access means life - pulmonary hypertension is a severe disease, and lack of treatment can be deadly!

Patient stories from around the world tell of the struggle for access to care and medicine, yet they radiate hope, optimism, and resilience. Only together can we break the barriers that prevent PH patients from accessing treatments and proper care, making sure everyone receives what they need, no matter where they live, or what their background is.

💙 Your stories break barriers! Share them and join our Access Means Life campaign, marking this year’s PH Awareness Month.

Send us your stories directly on our socials, or to our head of digital media under: maleen@phaeurope.org

15/10/2025

PHAEUROPE joins the Global Allergy & Airways Patient Platform (GAAPP) in marking the World Chronic Cough Day 🌍 🗣 on 15 October. Chronic cough is more than just a symptom - it is recognized as a disease in its own right, affecting quality of life, sleep, and daily functioning. In adults, it is defined as a cough lasting eight weeks or longer, often persistent and disruptive.

For people with pulmonary hypertension (PH), chronic cough can be a significant and sometimes overlooked issue. It is typically dry, but may occasionally produce blood, and often occurs alongside shortness of breath, chest pain, fatigue, or swelling in the legs and ankles. In PH, chronic cough can result from right-sided heart failure, where fluid builds up in the lungs, or from underlying lung conditions such as COPD or interstitial lung disease.

By raising awareness of chronic cough, PHAEUROPE aims to highlight its impact on PH patients and the importance of early recognition and proper management, helping both patients and healthcare professionals understand when a cough signals a serious underlying condition.

Global Allergy & Airways Patient Platform 💚

15/10/2025

Without You There Would Be No Us – The Heart of Hungary’s PH Community 💙

Every community has someone whose light never fades - someone who quietly turns challenges into change. For the Hungarian PH community, that light is Eszter Csabuda, president of Tüdőér Egylet, the Hungarian Pulmonary Hypertension Association.

As one of the founding members, Csaba Konkoly JD remembers the beginning:

“In 2007, we faced a difficult situation - access to medicines for PH patients was limited, and there was a pressing need to make this rare disease known and understood. That’s why we founded Tüdőér Egylet. From the very start, Eszter was elected president, and she has been working tirelessly for Hungarian PH patients ever since.”

Thanks to years of perseverance and collaboration, the situation in Hungary has transformed. Today, five PH centers care for patients, and almost all therapies are available. Behind these achievements stands Eszter - a constant source of help, empathy, and guidance. Day or night, she offers advice, shares trusted information, and supports patients with wisdom born from her own experience of living with PH.

“She is the soul of our community,” Csaba says, “the one who brings us together at our national meetings, where patients and families find not only knowledge but also the power of togetherness.”

Through Eszter’s compassion and leadership, Tüdőér Egylet has grown into more than an association - it has become a circle of friends bound by trust, courage, same illeness but above all – care and compassion.

To Eszter, and to all those who dedicate their hearts and breaths to others: you are the strength that keeps our community united and without, you there would be no us! 💙

Tüdőér Egylet PH 🙌💪

14/10/2025

from Israel – Raising Awareness About CTEPH 💙

In Israel, awareness of pulmonary hypertension (PH) continues to grow - this time through national television!
Dr. Mike Segal, head of the Pulmonary Hypertension Clinic at Sheba Hospital, appeared on a popular morning show to explain one of the lesser-known but treatable forms of PH: Chronic Thromboembolic Pulmonary Hypertension (CTEPH).

During the interview, Dr. Segal described how CTEPH can develop when blood clots in the lungs fail to dissolve completely, leading to chronic blockages, and high pressure in the pulmonary arteries. “When we talk about thromboembolic pulmonary hypertension, we mean pulmonary hypertension that begins with blood clots, usually forming in the lower limbs. These clots can break loose, travel to the lungs, and get stuck there.

At that stage, if the condition is diagnosed, we treat it as a pulmonary embolism by giving the patient blood thinners. In most cases, the clots dissolve and disappear, and everything returns to normal. But in a small number of cases, the clots don’t dissolve - they turn into scar tissue, permanently blocking parts of the pulmonary arteries.

This leads to a chronic blockage in the lung’s blood vessels, and therefore an increased pressure is needed to push blood through them.”

He emphasized the importance of early diagnosis - especially when symptoms such as shortness of breath, chest pressure, or fainting during exertion appear. Dr. Segal further elaborate that the first and most important test to diagnose CTEPH is called a ventilation–perfusion (V/Q) scan. It’s a type of nuclear medicine imaging that shows areas of the lungs with poor blood flow. With this test, doctors are looking for regions where blood flow is reduced but air flow is normal - that’s the hallmark of this condition. If both are abnormal, it could be something else, like pneumonia.

The good news? Unlike all other forms of PH, CTEPH can sometimes be cured through advanced surgery or catheter-based interventions. As Dr. Segal explained, 80–90% of patients who undergo surgery can return to a full and active life — a remarkable achievement for a condition that was once considered fatal.

✨ A big thank you to Dr. Segal and the team at Sheba Hospital for helping to shed light on PH and bring hope to patients and families across Israel.

Pulmonary Hypertension Israel העמותה הישראלית ליתר לחץ דם ריאתי

13/10/2025

📢 New issue of the Mariposa Journal is out!

Head to our website and get your digital copy of the 34th special WPHD edition, fully dedicated to World PH Day. Explore the activities of our member PH patient associations and other global PH communities.

Inside this issue:

☑Details about our WPHD special webinar on Climate Change with Dr. Simon Clark, Dr. Mona Lichtblau, and Dr. Lucilla Piccari
☑Highlights from World PH Day events across the globe
☑Stories from this year’s campaign: “Sometimes It’s PH”
☑PHAEUROPE activities
☑Much more

📖 Read and celebrate the achievements of the global PH community!

➡Get your copy here: https://www.phaeurope.org/mariposa-journal/mariposa-journal-2025-summer-n-34/

11/10/2025

🌍💙 Today, Europe unites to raise awareness about organ and tissue donation.

At PHAEUROPE, we proudly stand in solidarity with this life-saving cause. For so many people living with pulmonary hypertension (PH) and pulmonary arterial hypertension (PAH), a lung transplant is not just a treatment - it’s a second chance at life.

Every conversation, every shared post, and every decision to register as a donor can make a difference.🫵

🤝Join us in spreading hope - because giving the gift of life is the greatest act of humanity.

10/10/2025

💚 It’s World Mental Health Day.🧠

Today, choose to breathe - and choose to share your anxieties, because they should be heard.

This is also a day to remind ourselves and others of the importance of access to mental health support — especially for those living with chronic conditions like pulmonary hypertension. Feelings of isolation, overwhelming pressure, and depression are common among patients. Yet, what is also common is the compassion we can find in those around us 🤝.

From exercising and practicing mindfulness 🧘‍♀️, to maintaining a healthy diet, getting adequate sleep 😴, and talking openly about your anxieties, fears, and concerns — all these strengthen mental health, which in turn can become a foundation for physical healing.

💡Anxiety and depression in PH patients can range from 52% to 65%.

➡Find out more about our initiative: www.phaeurope.org

08/10/2025

from Belgium 🇧🇪

Our Belgian member association took part in the Week Against Bullying with the campaign (Together Against Bullying). 💪💜
They remind us that everyone deserves to be themselves without fear of bullying. For young people living with Pulmonary Hypertension, life can already be extra challenging — which makes it even more important to stand together and say loud and clear: Bullying is never okay.

💙 Their message is one of respect, understanding, and friendship — and we are proud to see them raising awareness and encouraging others to take a stand.

PH Belgium - Pulmonale Hypertensie vzw

07/10/2025

Strength Through Love – Without You There Would Be No Us 💙

Some sources of strength are bigger than life itself. For people living with pulmonary hypertension, courage often begins with love — the love that keeps us moving forward when everything seems uncertain.

For Oksana from Ukraine, that love came from her son, Vlad. Twelve years ago, when he was only four years old, Vlad became her reason to fight for life. The diagnoses and prognoses she received in Ukraine painted a grim picture, but her little boy refused to let her give up. “He became my source of strength and inspiration to fight not only for myself, but also for others,” Oksana shares.

Once her condition was stabilized, Oksana transformed her gratitude into action. She founded the “Dalila Sisters” Charity Foundation, which for 12 years has been supporting people with pulmonary hypertension in Ukraine. Later, she helped establish PHURDA, the organization that now represents Ukrainian patients at the European level.

“Even the darkest runway in life can lead to takeoff,” she says, “and a small loving heart can inspire truly great things.”

Because of the love of one little boy, thousands of patients in Ukraine have received support, hope, and a stronger voice in Europe.

This story reminds us that behind every medical journey is not only courage, but also love — love that can turn despair into strength and individual struggle into community change.

To Vlad, and to all those who inspire and lift up people with PH: without you, there would be no us. PHAEUROPE also extends thanks to Oksan for all she has done for so many PH patients. 💙

Благодійний Фонд "Сестри Даліли" 🙌

Pulmonary Hypertension Association Europe

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