Pulmonary Hypertension Association Europe, Wilhelmstrasse 19, Wien (2026)

13/04/2026

🌍 Today is World Sarcoidosis Day!

Sarcoidosis is a rare condition that can causes swelling in different parts of the body. It often affects the lungs, but it can also affect the skin, eyes, heart and other organs.

One of the challenges with sarcoidosis is that it can look very different from person to person. Some people may feel short of breath, have a cough, extreme tiredness or notice chest discomfort🫁

Others may have mild or very few symptoms, which can make it even hard to diagnose.

If you or someone you know wants to learn more, visit the ELF website for more information about sarcoidosis, including:

🫁 Symptoms and how the lungs can be affected
🫁 Diagnosis and treatment
🫁 Advice for living well with sarcoidosis

Learn more: https://europeanlung.org/en/information-hub/lung-conditions/sarcoidosis/

11/04/2026

Any pause in breathing is distress - a powerful reminder of how vital every breath truly is. 🌬️ 💨

For the pulmonary hypertension community and everyone living with the diagnosis of PH, the cost of breathing is deeply understood. The value of every breath becomes the measure of a life fully lived.

Often compared to breathing through a straw while wearing a tight nose clip, living with pulmonary hypertension means every breath takes tremendous effort - and none can be taken for granted. Many people with PH rely on oxygen therapy, life-changing medication, clean air, and breathing techniques just to do what most take for granted.

On World Breathing Day, let’s pause together.
✨ Pause. Breathe. Unite. ✨

📸Photo: PHA Slovenia - Društvo za pljučno hipertenzijo Slovenije 🙏

Join PHAEurope in raising awareness and standing with the global PH community. 💙

➡️Learn more: phaeurope.org

🙏💪

10/04/2026

from Croatia 🇭🇷 👏🙌

At the breathtaking Đurđevački pijesci – often called the “Croatian Sahara” – the Croatia Sahara Trail 2026 became more than just a race. Across shifting sands and under a bright spring sun, the PH community showed that strength, unity, and purpose can carry you further regardless of terrain or hardship.

Last week, in a setting where every step is a challenge, members of the PH team ran not only for themselves, but for those who cannot – turning each kilometre into a message of hope 💙

🏆 Outstanding results:
🥇 Jurica Fapali – 1st place (recreational race, 5.7 km)
🥈 Juro Buljan – 2nd place
🥉 Renato Dasović – 3rd place

A special thank you to everyone who wore the “Get Breathless for Pulmonary Hypertension” t-shirts, helping raise awareness and show solidarity with people living with pulmonary hypertension. Congratulations to PHA Croatia „Plava Krila“ on their continuous work for PH patients in Croatia.

Because it wasn’t just about how fast you run – it was about who you run for.

And while Croatia may have its own Sahara, it also has people leaving behind footprints of awareness, compassion, and lasting impact. 💙

PH "Plava krila "Croatia 👏

08/04/2026

𝗧𝘄𝗼 𝗣𝗲𝗿𝘀𝗽𝗲𝗰𝘁𝗶𝘃𝗲𝘀, 𝗢𝗻𝗲 𝗚𝗼𝗮𝗹: 𝗧𝗿𝗮𝗻𝘀𝗳𝗼𝗿𝗺𝗶𝗻𝗴 𝗣𝗛 𝗖𝗮𝗿𝗲 𝗧𝗵𝗿𝗼𝘂𝗴𝗵 𝗖𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗧𝗿𝗶𝗮𝗹𝘀 🫁🔬

Clinical trials are more than just data points - they are the heartbeat of innovation and the foundation of hope for the Pulmonary Hypertension community, and PH patients play a crucial role as well.

Join us for a special World PH Day Webinar featuring two leaders in the field:

• 𝗗𝗿. 𝗠𝗶𝗰𝗵𝗲𝗹𝗹𝗲 𝗚𝗵𝗼𝗳𝗿𝗮𝗻𝗶 (VP of Clinical Development, Liquidia Corporation) offers the industry’s strategic perspective on bringing new therapies to life.

• 𝗣𝗿𝗼𝗳. 𝗗𝗿. 𝗔𝗿𝗱𝗲𝘀𝗵𝗶𝗿 𝗚𝗵𝗼𝗳𝗿𝗮𝗻𝗶 provides the medical and researcher’s lens on the frontlines of clinical trials.

In line with this year’s theme, "Hope in Every Trial," we are diving deep into how research, clinical trials, and advocacy unite to change patient outcomes globally.

📅 Date: May 5, 2026
🕕 Time: 18:00 CET
🌐 Platform: Bel Air Center Online
╰┈➤Go to the Live Presentation Room
🔗 Create a free account or log in at: belaircenter.info

Don’t miss this year’s live WPHD 2026 webinar - save the date!

07/04/2026

Health is not a given - it is an investment, and our greatest form of wealth. 💙

World Health Day is marked on the occasion of the founding of the World Health Organization (WHO). PHAEurope stands firmly in supporting and advocating for the right to health.

This year’s theme, “Together for Health. Stand with Science,” is especially important to our community. It calls for global unity in combating misinformation and emphasizes the power of evidence-based, collaborative science in improving lives.

For those living with pulmonary hypertension and other chronic conditions, health is not static. It is a constant pursuit, closely tied to one essential measure: quality of life.

Achieving and maintaining that quality requires more - more time, more resources, more understanding, more collaborative science, and innovative treatments, as well as stronger support from policymakers and decision-makers. It demands early diagnosis, access to the right treatments, and a community that stands together.

For years, runners and racers around the world have dedicated their health, strength, and determination to raise awareness of pulmonary hypertension - putting themselves and their health to the test and getting breathless for a noble cause. World Health Day is an ideal opportunity to thank them and wish them good health.

Furthermore, today, we reaffirm a simple truth: everyone deserves the opportunity to live a healthy life, and this too is our shared obligation.

Because behind every diagnosis is a person striving not just to live - but to live well. 🌍

➡For additional information, visit http://www.phaeurope.org

➡To join the movement of inspiration and resilience within the global PH community, register here for free: https://belaircenter.info/registration/

06/04/2026

goodPHnews from Poland 🇵🇱💙👏

PHAEurope is proud to share a heart-warming update from Polskie Stowarzyszenie Osób z Nadciśnieniem Płucnym i Ich Przyjaciół – PHA Poland and their recent heartwarming activities during Easter time.

🌸 Easter visits bringing smiles to patients🐣

It has been a busy and meaningful time for the association’s volunteers. Over the past weekend, they visited a children’s hospital where they handed out Easter colouring books and left a box of gifts for children living with pulmonary arterial hypertension.
They then continued their visits to another hospital where adult PH patients are treated, delivering charming notebooks prepared especially for them.

📓 Reaching more PH centres across the country

The initiative continued with another hospital visit, this time to the Krakowski Szpital Specjalistyczny im. św. Jana Pawła II, where Easter notebooks were delivered to the ward caring for PH patients.
This marks the fourth hospital that has received small Easter gifts as part of this initiative.

💙 Support, awareness and real impact

During the visits, members of the association spent time with children in the paediatric cardiology ward, sharing decorations, colouring books and small gifts. The moments were filled with smiles, conversations, and precious time that helped young patients forget about their illness—if only for a while.
These actions are part of the association’s broader commitment to supporting people living with pulmonary arterial hypertension and raising awareness of this rare disease.

👏 A big thank-you to the Polish PH community for their compassion, dedication and continued support to all the patients. Small gestures truly make a big difference.

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

03/04/2026

🌍💜 Join the World Pulmonary Hypertension Day 2026 Global Campaign

PH patients lead by example - transforming challenges into strength and making the journey of diagnosis and treatment more bearable for others. They are at the very heart of research, treatment, and decision-making. Real progress begins with patients!

This year’s campaign, “Hope in Every Trial” 🦋, shines a light on the vital role patients play in advancing care and treatment. Through participation in clinical trials and research, patients are not only contributing to science - they are shaping the future of pulmonary hypertension treatment. By sharing your stories, this campaign empowers you to drive meaningful change, bring hope to the entire community, and inspire others to improve their own lives and the lives of those around them.

💬 Have you participated in a clinical trial?
🌍 Are you advocating for better access to research in your country?

We want to hear your story.

✨ Send us:

📸 A photo of yourself
📝 A short story, quote, or testimonial
📩 Send to: maleen@phaeurope.org

Together, let’s show the courage, resilience, and determination that define the PH community—and bring us closer to better treatments and a cure. 💙

🙏

01/04/2026

On a day known for pranks, fake news, and jokes, we want to be absolutely clear: 𝗣𝘂𝗹𝗺𝗼𝗻𝗮𝗿𝘆 𝗛𝘆𝗽𝗲𝗿𝘁𝗲𝗻𝘀𝗶𝗼𝗻 (𝗣𝗛) 𝗶𝘀 𝗻𝗼𝘁 𝗮 𝗷𝗼𝗸𝗲 ❗💙

Living with a complex and rare condition like PH means your health depends on the quality of the information you trust. The internet can be a powerful space for learning and connection, but it can also be a minefield of misinformation, half-truths, and harmful advice.

Stay informed. Stay safe. Stay empowered. 🛡️
Verify your sources 🔎

Always check the credibility of medical information. Rely on trusted patient organizations, academic institutions, and peer-reviewed research. Resources such as PHAEurope (www.phaeurope.org) and the online PH patient platform Bel Air Center (www.belaircenter.info), as well as your national PH associations, exist to provide accurate, patient-centered guidance.

Seek specialist expertise 👩‍⚕️
PH is rare and complex. If you are experiencing symptoms or have concerns, do not settle for general advice. Advocate for a referral to a PH specialist who understands the disease.

Decide with data 📊
Medical decisions should be guided by clinical evidence and conversations with your healthcare team, not by social media trends or unverified claims.

The bottom line 💡
This April Fool’s Day, remember: a prank lasts a moment, but your health is for life.
Check your sources. Trust credible experts. Stay informed.

31/03/2026

🇧🇦 from Bosnia and Herzegovina 💙

At a time when pulmonary hypertension takes people’s breath away, stories like this give it back. In Slavonski Brod, Croatia, at one of the most demanding athletic events in the region, the 9th Polojska Ultra held on March 7, 2026, runners from across Europe gathered to test their limits. Among them was a name the PH community proudly knows, Enes Ibrahimagić from Bihać, Bosnia and Herzegovina, who achieved something extraordinary. He ran 100 kilometers in 10 hours, dedicating every step to people living with pulmonary hypertension. 🏃‍♂️ ⏱️🫁

This is not just one race or one result. For years, Enes has been running with purpose, dedicating every kilometer, every finish line, every medal, and every achievement to PH patients in Bosnia and Herzegovina and everywhere. His journey is not only about endurance, but about solidarity, awareness, and standing with those who fight for every breath every day.

What Enes has built goes beyond sport. It is a powerful message of strength, humanity, and commitment that continues to inspire the entire PH community worldwide.

👏 Dear Enes, bravo. Your run carries hope further than any distance. Congratulations to the PH BiH Dah, as well.

Plućna hipertenzija BiH 🙌

30/03/2026

💙 from Latvia 🇱🇻

We are proud to highlight the continued impact of the Pulmonary Hypertension Association of Latvia, which is becoming increasingly active within Latvia’s rare disease community. The organization demonstrates strong commitment to advocating for all rare diseases while championing the rights of those living with pulmonary hypertension. Their latest initiative, the photo exhibition “The Sound of Flowers,” brings the voices and stories of people with disabilities directly into the heart of national decision-making.

The exhibition presents delicate and nuanced portraits of ten individuals, emphasizing dignity, strength, and the importance of visibility, and was created within a project co-funded by the European Social Fund Plus and the Latvian state. As Ieva Plūme highlighted: “These 10 people with disabilities… are not defined by disability. Their lives are defined by ability and capability. That is what I wish for the Latvian Parliament as well — the ability to make decisions and the ability to act!”

By combining art, advocacy, and policy engagement, this initiative demonstrates truly commendable leadership and continues to strengthen visibility and inclusion for all people living with disabilities, including those with pulmonary hypertension.💙

📸Photo by Ieva Abele, Parliament of the Republic of Latvia.

Pulmonālās hipertensijas biedrība 🙌

➡Original post: https://www.facebook.com/share/p/1EKzvZCJrJ/

27/03/2026

📖 PHAEurope Mariposa Journal

Published twice a year, Mariposa showcases the activities of our member associations across the PHA Europe network, along with highlights from patient organisations around the world. It brings together key updates, stories, and developments for the pulmonary hypertension (PH) community.

💙 With Mariposa Highlights, we aim to explore selected articles and news from the latest issue in more detail.

On page 55, you can discover the activities of the Hungarian association. Among their advocacy efforts, this awareness initiative at the Budapest Marathon stands out as an example of community engagement.

During the event, PH patients and their relatives walked together, covering 2,300 meters side by side. Their participation drew attention and appreciation from onlookers as the team completed the route.

At the forefront were our President, Eszter Csabuda, and PH advocate Gergely Mészáros. The atmosphere reflected engagement and a shared commitment to raising awareness.

✨ Turn to page 55 of Mariposa to read more, and stay tuned as we continue with our Mariposa Highlights next week.

Amazing photos of the events featured in our journal tell more than 1000 words.

📥 Read the Winter Edition here:
https://www.phaeurope.org/.../mariposa-journal-2025.../

26/03/2026

PHAEurope was pleased to participate in the ERN-LUNG Annual Board Meeting in Paris, where clinicians, researchers and patient representatives from across Europe came together to share experiences, address current challenges and shape future priorities in rare respiratory diseases.

PHAEurope was represented by Hall Skaara, who contributed to the presentation of the Pulmonary Hypertension Expert Patient Academy (PHEPA) — a joint initiative with the Alliance for Pulmonary Hypertension (AfPH) aimed at strengthening disease-specific training and empowering patient advocates to engage meaningfully in research, care development and policy discussions.
During the meeting, Hall also briefly presented his new book, a personal survival guide on how to live well with a chronic condition such as pulmonary hypertension, highlighting the importance of integrating patient perspectives alongside scientific expertise.

PHAEurope values the strong collaboration within ERN-LUNG and remains committed to strengthening the voice and involvement of people living with pulmonary hypertension across Europe.

ERN-LUNG - European Reference Network for rare respiratory diseases

Pulmonary Hypertension Association Europe

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