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

06/02/2026

Fifth and sixth episodes of the PVRI’s 11-part empowerment series to support people living with pulmonary hypertension (PH), their families, and carers 💪📣

🔎 Theme 5: Connect with Peer-to-Peer Support & Community Engagement – Dulce Barbosa, PH Fellow, Pulmonary Hypertension Portuguese Association

This episode highlights the power of connection. Engaging with patient associations or local groups helps strengthen resilience, share experiences, and exchange practical tips and encouragement. If no groups exist in your area, consider starting one or joining an online forum. When you feel ready, becoming a peer mentor allows you to give back and support others navigating life with PH. You are not alone — and by connecting, you help others feel less alone too.

🔎 Theme 6: Explore Clinical Trials & Research Participation – Louise Bouman, Pulmonary Hypertension Patient and Advocate, Netherlands

This episode focuses on understanding research opportunities and the role patients can play. Learn how to ask your doctor about clinical trials, what participation involves, including potential benefits and risks, and your rights and protections as a participant. Taking part in research is always a personal choice - being informed empowers you and puts you in control of your health and life journey.

You don’t have to face pulmonary hypertension alone - and your voice matters.
➡ Explore the series and be empowered: https://pvrinstitute.org/pulm.../how-empower-yourself-others

💜 Thank you, PVRI, for continuing to strengthen patient empowerment and support within the PH community.

Pulmonary Vascular Research Institute (PVRI)

04/02/2026

🔎🎗️Each year, around 2.7 million Europeans are diagnosed with cancer, and about 1.3 million lives are lost. Worldwide, more than 19 million people receive a cancer diagnosis annually, with approximately 10 million deaths, making cancer one of the leading causes of death globally. The numbers are rising. Nearly one in five people worldwide will develop cancer in their lifetime, showing just how widespread this challenge is.

As Rare Disease Day approaches, it is important to remember that over 5 million Europeans live with rare cancers, which together account for about a quarter of all cancer diagnoses.

The theme for World Cancer Day 2025–2027, United by Unique, reminds us that every patient’s story matters.

💡 What unites us all is urgency. Early diagnosis and screening save lives, equitable access to care gives hope, and integrated health systems can better support everyone - from the most common to the rarest conditions.

💙 Let’s unite for faster diagnosis, better care and treatments, and hope for all patients. Urgency unites us.

➡ Learn more: phaeurope.org

04/02/2026

📢𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗩𝗼𝗶𝗰𝗲 𝗗𝗿𝗶𝘃𝗶𝗻𝗴 𝗣𝗿𝗼𝗴𝗿𝗲𝘀𝘀 𝗶𝗻 𝗣𝗔𝗛
PHAEurope and the patient perspective represented at Cereno’s Capital Markets Day

PHAEurope is proud to highlight the participation of patient advocate and PHAEurope representative Hall Skaara at the Cereno Scientific Capital Markets Day 2026. Taking place on Thursday, February 5, 2026, in Stockholm & virtually, the event brings together analysts, investors, financial media, and scientific leaders to explore Cereno Scientific’s clinical programs, strategic priorities, and more.

For PHAEurope, this is a landmark moment: the patient voice is represented at the highest level of research and innovation. Hall Skaara will share the perspective of a person living with PAH and a dedicated patient advocate, highlighting what meaningful change truly looks like in PAH and pulmonary hypertension more broadly.

Event Highlights:
• 13:50 – Patient perspective: Living with PAH – Hall Skaara, PHAEurope

📅 Date: February 5, 2026
🕐 Time: 13:00–16:30 CET
📍 Location: Stockholm & virtual

PHAEurope values moments like this, where patients, researchers, and industry leaders come together to shape the future of PAH care, ensuring that patient voices are central to innovation and better outcomes.

👉 Full program & registration: https://cerenoscientific.com/investors/cmd-2026/

03/02/2026

from Spain 🇪🇸💙

Creativity, collaboration, and patient-centered care across borders

During the PVRI Congress 2026, Fundación Contra la Hipertensión Pulmonar (FCHP) proudly took part in a creative workshop on Pulmonary Hypertension (PH) and Interstitial Lung Disease (ILD/EPI), held in Dublin on January 28 🇮🇪.

Bringing together numerous patient associations, the workshop was an inspiring space for intensive collaboration - focused on developing high-impact, meaningful materials for the PH and ILD community. Beyond the creative work, it enabled a rich exchange of experiences, ideas, and perspectives, strengthening partnerships and building synergies toward more patient-centered care.

FCHP expressed its gratitude for the opportunity to participate, and we warmly congratulate FCHP on its continuous advocacy work for people living with PH. 💙

PHAEUROPE was also represented at the PVRI Congress 2026 by Hall Skaara.

Fundación Contra la Hipertensión Pulmonar 👏🙌

02/02/2026

PHAEUROPE was proud to have been represented at the Pulmonary Vascular Research Institute’s (PVRI) annual conference in Dublin 🇮🇪, with Hall Skaara attending on behalf of the organisation.

The meeting featured outstanding science and important new developments in pulmonary vascular disease, showcasing the latest research, clinical advances, and the strong momentum within the global PH community.

Hall Skaara contributes to PVRI in his role as lead of the Patient Engagement & Empowerment workstream, together with Wendy Gin-Sing. The aim of this workstream is to focus on and strengthen the patient voice in research and innovation. The newly published 2025–26 workstream report can be read here:
👉 https://pvrinstitute.org/learning-hub/news/2025-26-iddi-workstream-task-forces-report-published

A special thank you to Professor Sean Gaine in Dublin for being an excellent host, and to PVRI for a very well-organised and inspiring event.

Pulmonary Vascular Research Institute (PVRI)

02/02/2026

from Ukraine 🇺🇦 shines a light on the tireless work of the Ukrainian PH Patient Association PHURDA and the charity organisation Sister Dalila, whose joint efforts continuously improve the lives of people living with pulmonary hypertension, from the youngest patients to older adults, and their families.

Through nationwide and community-led initiatives, including plastic-cap recycling campaigns, school and parish collaborations, and international solidarity, they secure vital resources such as life-saving medicines, oxygen concentrators, inhalers, pulse oximeters, and other essential medical equipment. Beyond medical support, they respond to urgent human needs, helping children continue their education during power outages, bringing hope through St. Nicholas Day gifts, and restoring dignity and joy in extraordinarily difficult circumstances.

Operating in the harsh reality of war, PHURDA and Sister Dalila demonstrate remarkable determination, compassion, and unwavering spirit. Their work is a powerful reminder that even in times of profound hardship, solidarity, persistence, and kindness can protect the most vulnerable and save lives. Their commitment stands as an inspiration to the entire PH community and far beyond.

Their most recent initiative, the PH Academy, launched in cooperation with the IT College of Lviv Polytechnic, offers patients with pulmonary hypertension and their family members a unique opportunity to attend free Cisco Academy online training courses, supporting education, digital skills, and long-term empowerment.

PHAEurope thanks the entire team of dedicated patient advocates and champions of life at PHURDA. 💛💙💪👏 Благодійний Фонд "Сестри Даліли"

#легеневагіпертензія

30/01/2026

💙 PHAEUROPE is pleased to share exciting news: a brand-new version of the HEART WORKS app, developed by our partners at phaware® global association, has now been released worldwide.

Whether you are living with , caring for someone who is, or supporting patients as a clinician or advocate, the tools you need are now brought together in one empowering place. The updated app now includes email and URL links to PH advocacy groups across the globe, making connection and support more accessible than ever.

🌍 Meet Heart Works — the new phaware app designed for patient-driven PH management, guiding every step of the with:

Real-time health tracking

Quality of life surveys

6-minute walk tests

Continuous monitoring insights

🎧 Users can also explore 550+ podcasts, webinars, and expert interviews, along with daily global PH news through the app’s Patient Experience Portal.

Heart Works further supports the community by simplifying participation in clinical research and delivering personalized education and support for patients, caregivers, clinicians, and advocates alike.

✨ Take control. Get connected. Feel empowered.
Download Heart Works today and be part of the future of PH care:
👉 www.phaware.global/heartworksapp

Find it in your local App Store - wherever you are in the world! I'm Aware That I'm Rare: the phaware podcast

29/01/2026

💙 Respiratory News – Scientific News in Cardiopulmonary Research 💙

We are sharing recent research from Cereno Scientific on CS014, a novel HDAC inhibitor being developed for cardiovascular and pulmonary diseases. Published in the Journal of Thrombosis and Haemostasis, the study highlights CS014’s potential to reduce thrombosis and vascular remodeling while maintaining normal coagulation, supporting its therapeutic promise in conditions such as idiopathic pulmonary fibrosis and other progressive cardiopulmonary diseases.

📄 Read the Peer-Reviewed Publication here: https://doi.org/10.1016/j.jtha.2025.11.011

28/01/2026

💙 Without You, There Would Be No Us – Tribute to Dr. Kristóf Karlócai 💙

Eszter Csabuda expresses her heartfelt gratitude to Dr. Kristóf Karlócai. Her journey with him began in 2006, when she was diagnosed with pulmonary hypertension, a rare and incurable disease. At that time, he was almost the only physician in Hungary treating this condition. He welcomed her among a few patients, giving strength, comfort, and hope, and in Eszter’s words, literally saved her life.

In 2008, he helped establish a patient organization, recognizing that patients need more than medical treatment—they need community, support, and belonging. Through his empathy, professionalism, and dedication, he has shown how care and human connection can transform lives.

Dr. Karlócai is a pioneer in pulmonary hypertension research and treatment in Hungary. He continually develops his knowledge and shares it generously with young doctors, medical students, and colleagues. Many professionals have been inspired by him, and today several PH centers are available nationwide. In 2021, he was awarded the Hungarian Order of Merit, Knight’s Cross, honoring his clinical, educational, and research achievements.

Every year at the national patient meeting, he emphasizes education, explaining in clear language what happens in our bodies, what treatments exist, and how patients can participate in their own care. Patients also have the chance to speak with him personally and feel his genuine presence. Even in his free time, he offers guidance and support whenever possible.

His dedication, expertise, and humanity give strength and hope. He has devoted his career to PH research, treatment, and community building, always keeping the individual patient at the center. For Eszter and many others, he is more than a doctor - he is the embodiment of safety, knowledge, compassion, and hope.

“Without him, not only we as patients would not exist, but also the community that unites us through knowledge, care, and hope.”

27/01/2026

from Austria 💙🙌🇦🇹

When Science Meets the Stage
Science and movement combined with enjoyment were at the heart of a special afternoon on Tuesday, January 20. Under the motto “Laughter is healthy,” patients with PH and their relatives gathered for an enjoyable get-together at the Cellar Theater in Linz.

The event opened with an informative lecture by Dr. Regina Steringer-Mascherbauer from the Elisabethinen Hospital in Linz, focusing on diagnosis and current developments in PH therapy.
This was followed by practical examples presented by Maria Dobesberger, BSc, also from the Elisabethinen Hospital in Linz, demonstrating how patients with PH can maintain their muscle strength and lung capacity.
After a light refreshment, the highlight of the day followed: the farce “Out of Control,” which gave our laughter muscles a real workout.

Another successful contribution by PH Austria – Pulmonary Hypertension Initiative, offering those affected joy, an entertaining afternoon, and valuable information.

Lungenhochdruck Austria 👏

26/01/2026

💙 January – Quality of Life Month 💙

In the last week of January, we remind everyone that quality of life is not a luxury. For people living with pulmonary hypertension, it is a goal, a right, and a true measure of how well systems work.

Quality of Life means being heard, being supported, and being able to live beyond symptoms and limitations. It means access to timely diagnosis, appropriate treatment, psychosocial care, rehabilitation, and understanding—from healthcare systems, communities, and society as a whole.

For the PH community, quality of life is shaped every day by:
✨ The ability to manage symptoms and conserve energy
✨ Emotional safety, dignity, and mental well-being
✨ Social inclusion and understanding
✨ Opportunities to participate, contribute, and plan for the future

At PHAEurope, Quality of Life is at the heart of everything we advocate for. Because treatment outcomes should not be measured only in numbers, but in lived experience. Because living longer must also mean living better.

This January and throughout the year, we stand with patients, families, and healthcare professionals to reaffirm a simple but powerful message:
Quality of Life matters. Every day. For every person living with PH.

💙 Together, we continue to work toward a future where living with PH also means living with meaning, support, and hope.

➡Read more about our initiative: www.phaeurope.org

Pulmonary Hypertension Association Europe

06/02/2026

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