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

21/08/2025

World PH Day Around the World: Poland 💙🌍

Knowledge, community, and support came together in Otwock, where patients, families, doctors, and friends gathered to mark World Pulmonary Hypertension Day 2025.

👩‍⚕️ The meeting was enriched by lectures from leading experts: Prof. Marcin Kurzyna shared insights on modern therapies in pulmonary arterial hypertension, Prof. Adam Torbicki discussed diagnosis and treatment of pulmonary embolism, Prof. Maria Wieteska gave a powerful presentation on malnutrition and quality of life, and Beata Jaworska, MSc, spoke about subcutaneous pumps and Hickman catheters.

🎥 Participants also watched films on rehabilitation and patient stories, including the inspiring journey of a patient living with a subcutaneous pump and Hickman catheter. Writer Kinga Fukushima shared reflections from her book Pozbawieni Oddechu (“Deprived of Breath”).

🤝 The event was honored by the presence of city councilor Joanna Chmielewska, councilor Krystian Kiełtyka - longtime supporter of the PH community, and the leadership of the National Forum for Rare Diseases (President Stanisław Maćkowiak and Vice-President Marzena Nelken).

🌸 Beyond lectures, patients engaged in practical sessions, such as learning injection techniques with patient Iwona Kamińska, and found support from psychologists and fellow members of the PH community.

💙 PHAEurope warmly congratulates PHA Poland on this meaningful, educational, and inspiring WPHD 2025 gathering - showing that together, knowledge and compassion can bring strength and hope. It is always inspiring to see the PH community strong and active, and Poland remains a shining example.

Polskie Stowarzyszenie Osób z Nadciśnieniem Płucnym i Ich Przyjaciół 👏🙌🙏💪

20/08/2025

Without You There Would Be No Us 💙👨‍⚕️

Some doctors don’t just treat a condition. They help shape a life. Where others see limits, they see only life and progress.

For Danijela Pešić, President of PH Serbia, that doctor is Prof. Dr. Slavko Simeunović — a pioneer in pulmonary hypertension treatment in the Balkans, Harvard-trained, and a lifelong believer in the power of patience, progress, and personal care.

“When I was little,” Danijela says, “many doctors doubted I would survive due to the severeness of my condition. But Professor Simeunović believed in me. He used to say, ‘Hold on just one more day; a new treatment will come, and you’ll get better.’ He was right. For twenty years, I was treated by him at the children’s clinic in Tiršova. I dedicated my book about children with PH to him. Even today, our friendship and collaboration continue. He is like a second father to me.”

In a field where trust and time mean everything, the connection between a doctor and patient can be life-changing. Professor Simeunović’s lasting presence in Danijela’s life is proof of what compassionate care truly looks like. It can shape not just survival, but purpose.

To Professor Simeunović, and to all the doctors, the PH community has one message for you:

Without you, there would be no us. 💙

Organizacija Plućna hipertenzija Srbija - PH Serbia

19/08/2025

World PH Day Around the World: Slovakia 💙🌍

Community, resilience, and celebration. Slovakia united in support of patients with PH.

To mark World Pulmonary Hypertension Day 2025 and celebrate the 15th anniversary of the Slovak Patient Association for Pulmonary (Združenie pacientov s pľúcnou hypertenziou, o.z.) , the project I Will Climb for You brought together 112 participants from May 16 to 18 for a symbolic ascent of Veľký Javorník.

🌦 Despite cloudy skies, wind, and rain, no one was discouraged. Everyone climbed Veľký Javorník to show solidarity with patients living with PH. The event combined meaningful activities with joy, movement, and camaraderie. Even those who could not walk to the summit were carried on the backs of fellow hikers, embodying true support and encouragement. Hikers were carrying photos of many PH patients on their backs.

👨‍👩‍👧‍👦 Local residents Peter and Patrícia joined the group, guiding everyone on an easier route to the summit. The climb was inclusive for all ages, with children as young as 1 year old participating—carried on backs or walking alongside their families.

🌲 Surrounded by breathtaking nature, fantastic people, and supported by world-class hospitality at Hotel Podjavorník in Papradno, located within the protected Javorníky area, the weekend was a powerful reminder of strength and unity in the PH community.

💙 PHAEurope applauds the spirit and determination of everyone involved in this inspiring event and congratulate PHA Slovakia on a meaningful, emotional and well organized WPHD 2025 event.

Združenie pacientov s pľúcnou hypertenziou, o.z. 👏💙

18/08/2025

from Spain 👏🙌💙

📣 AGREEMENT FOR PULMONARY HYPERTENSION IN ANDALUSIA

The Pulmonary Hypertension Foundation (Fundación contra la Hipertensión Pulmonar) and Dr. María José Cristo, cardiologist at Virgen de Valme Hospital, have signed a collaboration agreement to improve care and support for Pulmonary Hypertension patients in Andalusia.

🗓 On October 21, 2025, a training course will be given to evaluators from the nine Andalusian disability centers, with the aim of raising awareness about this rare disease and its impact as an invisible disability.

💙 This step has been made possible thanks to the involvement of the Foundation’s Vice President and expert patient Salvador Calderón, and to the commitment of the Regional Government of Andalusia, especially Mr. Pedro Calbó Roca and Ms. María José Gutiérrez Rivas.

PHAEurope congratulates the Fundación contra la Hipertensión Pulmonar for continuing their efforts to improve the quality of life of Pulmonary Hypertension patients in Spain. 💪

Fundación Contra la Hipertensión Pulmonar 👏

15/08/2025

📣PHAEUROPE is excited to invite you to a free, patient-focused webinar unpacking key findings from the Pulmonary Hypertension Global Patient Survey (PHGPS), with a focus on European adult data. Hall Skaara from PHAEUROPE and Dr. Frances Varian will be leading the discussion.
Hall and Frances will be discussing:

- Time to diagnosis
- Quality of life
- Access to care
- Understanding the 10 Calls to Action

🗣 Live Q&A + discussion forum
🌍 Multi-language captions via Zoom
🤝 In partnership with PHAEUROPE & the European Lung Foundation
Register for free: https://lnkd.in/gM8EUXv3

15/08/2025

📣PHAEUROPE is excited to invite you to a free, patient-focused webinar unpacking key findings from the Pulmonary Hypertension Global Patient Survey (PHGPS), with a focus on European adult data. Hall Skaara from PHAEUROPE and Frances Varian will be leading the discussion.

Hall and Frances will be discussing:

- Time to diagnosis
- Quality of life
- Access to care
- Understanding the 10 Calls to Action

🗣 Live Q&A + discussion forum
🌍 Multi-language captions via Zoom
🤝 In partnership with PHAEUROPE & the European Lung Foundation

Register for free: https://lnkd.in/gM8EUXv3

13/08/2025

World Organ Donation Day 🌍💙 observed every August 13 is a powerful global reminder of the life-changing impact organ donation has on countless people worldwide.

Pulmonary hypertension (PH), including pulmonary arterial hypertension (PAH), is a leading cause for lung transplantation. Studies show PH accounts for 6 to 10% of lung and heart-lung transplants, offering patients a critical lifeline.

The power of donation is profound: one donor can save up to eight lives and improve the health of many more. This singular act plants infinite seeds of hope 🌱. For many PH patients, lung transplantation is their only chance to breathe freely, live fully, and embrace the future.

World Organ Donation Day is more than raising awareness — it’s a call to transform lives through the extraordinary gift of donation 🎁. Choosing to become a donor is a courageous, life-affirming decision that reflects our collective commitment to hope, health, and humanity.

By championing transplant and donor programs, we can break down myths, inspire action, and build a culture where organ donation is embraced as a vital shared responsibility 🤝.

➡ Read more about PHA Europe’s initiative: phaeurope.org

12/08/2025

Without You There Would Be No Us💙👨‍⚕️

At PHAEurope, we know that real change happens when knowledge meets compassion, and when doctors go beyond the expected to fight for those living with pulmonary hypertension 💜.

In Latvia, the Pulmonālās hipertensijas biedrība has become a powerful voice for PH patients. But much of what has been achieved would not have been possible without the tireless efforts of individuals like Ieva Plume, a PH patient and advocate, and Prof. Dr. Andris Skride, cardiologist and Head of the Rare Disease Centre at Pauls Stradins Clinical University Hospital. A duo of patient and doctor, working together with one goal — to outnumber PH and all its symptoms through persistence, shared vision, and mutual respect 🤝.

Prof. Skride has not only advanced PH diagnosis and treatment. He has helped reshape what it means to live with this condition in Latvia. A constant supporter of Pulmonālās hipertensijas biedrība, he has stood beside the patient community in moments that mattered most — offering his expertise, his voice, and his unwavering presence 🫶.

His dedication, both in clinic and in research, has given patients something they desperately need but rarely receive: a sense of visibility, dignity, and hope 🌟.

Pulmonālās hipertensijas biedrība dedicates this Without You There Would Be No Us thanks letter to Prof. Dr. Andris Skride, in recognition of his research and his steadfast commitment to PH patients in Latvia 🙏.

We at PHAEurope are proud to echo this gratitude.
To Prof. Skride, and to every doctor who chooses to stand with the PH community:

Without you, there would be no us. 💙

Pulmonālās hipertensijas biedrība

11/08/2025

from North Macedonia💪👏

🏅 First Place & First in Support for PH Patients

In North Macedonia, Valentina Uzunova and Stanimirka “Lola” Tasevska, together with other compassionate runners, turned their passion for sport into a mission to raise awareness for pulmonary hypertension (PH).

From the grueling Titov Vrv SkyRace (20 km, 1900m+ elevation) to the scorching Trčame za Racin 10 km race in +36°C heat, they pushed their limits not just for medals, but for visibility and solidarity with the PH community.

🏔 Valentina conquered Titov Vrv for the 5th time, earning 3rd place in her category, while reminding everyone that PH patients face an even greater challenge every day.

☀️ Lola triumphed with 1st place in her category in the Racin race, while fellow runners ran side by side to amplify the message of hope and support for those living with PH in North Macedonia and beyond.

Together, these athletes prove that awareness can run far and climb high, inspiring others to join the race for better understanding, earlier diagnosis, and improved care for PH patients.

Pulmonary Hypertension r.Macedonia Moment Plus 💙🙏

07/08/2025

World PH Day Around the World: Belarus 💙🌍
Awareness, creativity, and inclusion. Belarus empowers through education.

To mark World Pulmonary Hypertension Day 2025, the Public Association “Assistance to Patients with Pulmonary Hypertension” (PH Patient Association from Belarus) joined forces with the Molotovichi Special School to host a meaningful and multi-faceted event. The program combined learning, artistic expression, and adaptive physical activity to raise awareness about PH in a compassionate and engaging way.

💙 The event brought together patients, families, teachers, rehabilitation specialists, and volunteers. It created a supportive space where participants of all ages could come together in solidarity.

One of the highlights was a creative drawing workshop led by artist Yulia Myalik. Participants painted blue butterflies, the international symbol of pulmonary hypertension. The involvement of a young patient named Anastasia added a deeply personal and moving dimension to the event’s visual storytelling. Anastasia was also featured in PHAEurope’s WPHD 2025 social media campaign, "Sometimes it's PH."

📘 An educational session followed, delivered by physical rehabilitation specialist Asya Brililo. The lecture covered the signs and symptoms of PH, the role of physical activity for patients, and the importance of early diagnosis and consistent support.

💪 To round out the program, an adapted physical warm-up was held. A specialist in adaptive physical education led exercises tailored to the needs of PH patients, focusing on safe and gentle movement to encourage healthy activity within physical limitations.

💙 PHAEUROPE applauds this campaign for its thoughtful combination of awareness, education, and inclusion.

Легочная гипертензия Беларусь 👏

06/08/2025

goodPHnews from Poland 💙📢🇵🇱
Poland's PH Patient association leads with knowledge, care, and creativity!

The Polish pulmonary hypertension patient associations continue to set an inspiring example through their ongoing commitment to education and awareness across the country. From Warsaw to Poznań, their dedicated teams have been actively involved in outreach events that inform, empower, and connect.

Recently, they took part in the Quick Diagnosis of Pulmonary Hypertension campaign during a health fair in Poznań, organized by the City Council. Volunteers handed out informative leaflets, spoke with residents about early symptoms, testing, and treatment options, and shared life-saving knowledge in a warm and approachable way.

Their efforts didn’t stop with adults—children were also warmly welcomed at the booth with games, puzzles, and art activities that brought joy and smiles to all involved. This creative approach shows how awareness-raising can be truly inclusive and community-centered.

💙 The Polish PH associations are continuously expanding their reach—educating the public, advocating for early diagnosis, and supporting patients and families with compassion and determination.

We are also excited to announce that we will soon feature, as part of our WPHD Around the World Series, their beautiful World Pulmonary Hypertension Day 2025 celebration event—a truly memorable gathering that brought the PH community together in solidarity and hope.

Dziękujemy to our PHamily and friends in Poland for all that you do! 🙏💙

Polskie Stowarzyszenie Osób z Nadciśnieniem Płucnym i Ich Przyjaciół 👏🙌💙

05/08/2025

🌟 Without You, There Would Be No Us 💙
When hope nearly slipped away—a mother’s story of survival and the doctor who saw what others missed.

My name is Anne, and I want to share my journey—not just as a testament to survival, but as a heartfelt tribute to the doctor who gave me back my life when everything seemed lost.

It began a few months after I gave birth to my third child, a beautiful boy. The pregnancy had been difficult—maybe that should’ve been my first warning sign. I assumed my overwhelming fatigue was just part of adjusting to life with a newborn and two older children. But this was different. This was a kind of weakness that seeped into my bones.

Then came the fainting. At first, just dizzy spells. Then breathlessness. I couldn’t climb stairs. I’d lift my baby and collapse, heart pounding like I’d run a marathon.

“Postpartum depression,” the first doctor said. “It’s very common. You’re probably just overwhelmed.”

But I knew something was wrong. When I insisted, I was called hysterical. That word followed me from appointment to appointment like a cruel shadow. With every dismissal, my confidence eroded.

Months passed. My abdomen began to swell. Another doctor said it was irritable bowel syndrome. More medication. More sleepless nights. More fear that I was losing my mind—and myself.

Daily life became a series of impossible hurdles. Dressing my children felt like climbing a mountain. Making breakfast required breaks. I watched my family watch me fade.

By the time the cough started, I had almost given up. But my husband insisted I see one more doctor: Prof. Neville Berkman, a pulmonologist at Hadassah Hospital in Jerusalem.

I expected another dismissal. Another label. But instead—he listened. He looked at me, truly looked, and said words that changed everything:
“I think you may have pulmonary hypertension.”

For the first time in a year, someone believed me. He hospitalized me immediately. Tests confirmed it—my heart was failing. The pressure in my lungs was dangerously high. Without treatment, I likely had months to live.

That day, I didn’t just get a diagnosis—I got my life back. I got me back.

Today, I can chase my children in the garden. I can attend their school events. I can laugh with my husband. Every ordinary moment is a gift I once thought was slipping away.

To Prof. Berkman and to all the dedicated PH specialists:
You do more than practice medicine—you restore hope. You see patients when others look away. You give families their loved ones back.

💙 You saved my life—but more than that, you gave me back to my children, and them to me.

Sometimes I think about that year of searching for answers, and I’m reminded that behind every rare disease diagnosis is a patient who just needed one person to believe them.

🙏 Thank you for being that person for me

Pulmonary Hypertension Association Europe

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