Pulmonary Hypertension Association Europe

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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.

02/09/2026

💙 September is Pulmonary Fibrosis Awareness Month

This September, PHAEUROPE & Global supports EU-PFF in marking Pulmonary Fibrosis Awareness Month and its 2026 campaign, centred on one message we strongly believe in:

𝑫𝒐𝒏'𝒕 𝒏𝒐𝒓𝒎𝒂𝒍𝒊𝒔𝒆 𝒃𝒓𝒆𝒂𝒕𝒉𝒍𝒆𝒔𝒔𝒏𝒆𝒔𝒔. 𝑸𝒖𝒆𝒔𝒕𝒊𝒐𝒏 𝒊𝒕.

Breathlessness can be subtle. It may first appear only when climbing stairs, walking uphill or doing activities that once felt easy. Because it develops gradually, people may adapt to it, slow down or simply put it down to age, fitness or everyday life.

But persistent or unexplained breathlessness deserves attention.

It is one of the key symptoms of pulmonary fibrosis (PF), a serious lung condition in which scarring progressively reduces the lungs’ ability to transfer oxygen. It is also one of the most common symptoms of pulmonary hypertension (PH).

And the two conditions can be closely connected.

As pulmonary fibrosis progresses, reduced oxygen levels and changes within the pulmonary blood vessels can increase pressure in the pulmonary arteries, leading to PH associated with lung disease and/or hypoxia – Group 3 PH. When PH develops alongside PF, the heart has to work harder to pump blood through the lungs, and symptoms such as breathlessness, fatigue and reduced exercise capacity can become even more pronounced.

The challenge is that these symptoms can overlap.

Awareness means recognising change, asking questions and seeking appropriate medical assessment.

Throughout September, we stand with EU-PFF, people living with PF, people living with PH, their families and the wider lung health community in reinforcing a simple but important message:

💙 Don’t normalise breathlessness. Question it.

European Pulmonary Fibrosis Federation 🙌🤝

01/09/2026

PHAEUROPE & Global would like to sincerely thank Johnson & Johnson for their valued support and partnership.🏆💙🫁

At Johnson & Johnson, we believe health is everything. Our strength in healthcare innovation empowers us to build a world where complex diseases are prevented, treated, and cured, where treatments are smarter and less invasive, and solutions are personal.

Thank you, Johnson & Johnson, for remaining a strong partner in hope! 🙏

Johnson & Johnson 🙏

31/08/2026

💙 Without You, There Would Be No Us

Twenty years with pulmonary hypertension is not just a measure of time. It is a story made up of difficult days, shared moments, strength found again and again, and the people who remain close through all of it.

For Marta from Poland, that story is inseparable from the love and support of those around her.

“For more than 20 years, I have been living with pulmonary hypertension, and through all these years I’ve learned one thing: with the love and support of the people closest to me, I can overcome so much.

I feel incredibly lucky to have you by my side, through every challenge and every precious moment we share.

Thank you, my loved ones, for every day we have together, for your strength, your support, and simply for being there.

Without you, I wouldn’t be here.”

Sometimes the greatest source of strength is not found in a single moment, but in the people who keep showing up, year after year, through every change and every challenge.

🙏🫶💪 Thank you, Marta, for reminding us how powerful that constant presence can be, and thank you to all those who have walked beside you throughout more than two decades of living with PH.

💙 Who has stood beside you on your journey with PH? Share your words of thanks and help us celebrate the people whose love, care, support and presence have made a difference along the way.

Polskie Stowarzyszenie Osób z Nadciśnieniem Płucnym i Ich Przyjaciół

27/08/2026

📢 From patient empowerment to understanding clinical trials

Earlier this year, PHAEUROPE joined the Pulmonary Vascular Research Institute (PVRI) in sharing the PH Patient Engagement & Empowerment Series, created to help people living with pulmonary hypertension (PH), their families and carers feel more informed, confident and empowered.

One of the themes explored was clinical trials. Now, PVRI is taking that conversation further with a new dedicated resource:

🔬 Understanding Clinical Trials, a 13-part patient resource series

Created by the IDDI Patient Engagement and Empowerment Workstream, the series explains what clinical trials are, how they work and what taking part can mean.

Across 13 short videos, it explores topics including:

✔️ what clinical trials are and why they matter
✔️ deciding whether to take part
✔️ informed consent and patient rights
✔️ randomisation and placebos
✔️ what participation may involve
✔️ what happens after a trial
✔️ how patients can help shape research

Each topic is explored from different perspectives, including patient advocates, PH experts and industry representatives, bringing together lived experience, clinical expertise and the research perspective in a clear and accessible way.

Importantly, the series also highlights the role of patients as partners in research, showing how lived experience can help make clinical studies more relevant and meaningful.

💙 PHAEUROPE & Global is happy to contribute, with Hall Skaara once again providing the introduction to the series.

As PHAEUROPE’s Project Manager and Patient Advocate, and co-leader of PVRI’s Patient Engagement & Empowerment Workstream, Hall has been closely involved in bringing the patient perspective into these educational initiatives.

➡️ Explore the series:
https://pvrinstitute.org/PH-patient-resources/understanding-clinical-trials

Special thanks to PVRI and everyone involved in creating this valuable resource for the global PH community. 🙏 Pulmonary Vascular Research Institute (PVRI)

26/08/2026

PHAEUROPE & Global would like to sincerely thank Pulmovant for their valued support and partnership.🏆💙🫁

Pulmovant is committed to transforming the lives of patients through innovative therapies for pulmonary diseases.

Thank you, Pulmovant, for remaining a strong partner in hope! 🙏‎‎‎‎‎‎‎‎‎‎‎‎‎‎‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎‏‏‎ ‎
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25/08/2026

💙 Without You, There Would Be No Us

Behind every person living with pulmonary hypertension, there are often people whose knowledge, dedication and compassion become part of their story of survival.

For Ingrid, one of those people is Kristóf Karlócai MD, Chief Physician, who stood beside her during one of the most critical periods of her life and helped her find a way forward after a devastating PAH diagnosis.

“I would like to express my heartfelt gratitude for everything Kristóf Karlócai MD, Chief Physician, has done for me.

I lay in the hospital for a long time between life and death, shortly after the birth of my little son. When I learned that I was suffering from a rare, incurable disease, pulmonary arterial hypertension (PAH), you stood by my side.

At the beginning, I was very sick, and with your expertise, humanity and perseverance, you helped me not to give up the fight even for a moment.

You gave me my life back, supported me throughout the treatments and, thanks to this, my condition gradually improved. Today, I am very well considering the circumstances.

I know that without you I would not be here today.

It is difficult to express my gratitude in words, but I will be forever grateful to you for giving me a new chance at life.”

Ingrid’s words speak to something that goes far beyond treatment alone. During a time marked by fear, uncertainty and a fight for survival, Dr Karlócai’s medical expertise was accompanied by the humanity and perseverance that helped her continue.

🙏🫶💪 Thank you, Ingrid, for allowing us to share this important part of your journey, and thank you, Dr Kristóf Karlócai, for being there when your patient needed not only a physician, but also someone who would continue believing in the possibility of better days ahead.

Tüdőér Egylet PH 💙

💙

24/08/2026

World PH Day Around the World | Portugal 🇵🇹

In Portugal, World Pulmonary Hypertension Day became a month-long effort to connect people, knowledge, and hope.

Throughout May, the Portuguese Pulmonary Hypertension Association (APHP) joined PHAEUROPE’s “Hope in Every Trial” campaign with its own national initiative, “Pontes de Esperança para a HP” (Bridges of Hope for PH), bringing together awareness, education, advocacy, and community.

PH reached national television through two important RTP1 features. On 4 May, Dr. Mário Santos spoke on Bom Dia Portugal about diagnosis, specialised care, and early recognition. On 10 May, Jornal da Tarde shared the story of Luísa Gonçalves, a patient from Madeira who regularly travels to Porto for specialised PH care. Together, the broadcasts reached more than half a million viewers, while additional print and online coverage generated over 1.1 million estimated media impressions.

The centrepiece of the campaign took place on 16 May at ICBAS, University of Porto, where around 80 participants from across Portugal gathered for APHP’s national World PH Day event. Patients, families, healthcare professionals, researchers, institutions, and partners were joined by Dr. Miguel Guimarães, physician and Member of Parliament, reinforcing the importance of advocacy and greater visibility for PH.

The programme combined science with lived experience. “Respirar em Movimento”, led by sports physiologist Cristine Schmidt, brought participants outdoors for adapted breathing, mobility, and light resistance exercises. Sessions also explored pediatric PH, scientific innovation, pregnancy and contraception, with Dr. Cristina Cruz, while Nurse Carla Sá led a practical workshop on parenteral therapies and infusion pumps, giving patients and caregivers space to learn, ask questions, and share their experiences.

Patients and families also took part in a World caPHé session, discussing challenges, priorities, and ideas for improving life with PH. Beyond the event, APHP distributed educational posters and leaflets to Portuguese PH reference centres, extending awareness into healthcare settings.

The day concluded with APHP’s General Assembly and the election of a new board, welcoming four new members and opening a new chapter for the association.

Online, APHP sustained a strong May awareness campaign, reaching 59,416 people, generating 129,734 content views and 6,312 interactions, while also launching its new LinkedIn page to strengthen professional and institutional engagement.

Together, television, education, movement, scientific discussion, patient voices, advocacy, healthcare outreach, and digital engagement built real bridges of hope across Portugal.

💙 PHAEUROPE & Global thanks APHP for continuing to stand and fight for all people living with pulmonary hypertension, not only on World PH Day, but every day, 24 hours a day, throughout the year. Such commitment often requires sacrifice, determination, perseverance, and countless hours of dedicated work, but it ensures that the PH community continues to have a strong voice, meaningful support, and people willing to stand beside them whenever needed.

Associação Portuguesa de Hipertensão Pulmonar - APHP👏💙🙏

20/08/2026

🫁Inhibikase Therapeutics Announces FDA Orphan Drug Designation Granted to IKT-001 for the Treatment of PAH

Inhibikase Therapeutics has announced that the U.S. Food and Drug Administration (FDA) has granted Orphan Drug Designation to IKT-001, an investigational therapy being developed for the treatment of pulmonary arterial hypertension (PAH).

IKT-001 is a prodrug of imatinib mesylate, designed to be converted into active imatinib in the body, with the aim of providing similar therapeutic benefits while potentially reducing some of the safety and gastrointestinal tolerability concerns associated with imatinib mesylate. IKT-001 is a once-daily oral therapy with an anti-proliferative mechanism of action, rather than acting primarily as a vasodilator.

The therapy is currently being evaluated in the global IMPROVE-PAH Phase 3 study, which is actively enrolling patients.
The designation recognises PAH as a rare disease with significant unmet medical needs and provides incentives supporting the continued development of potential new treatments.

💙 PHAEUROPE & Global welcomes continued research and progress toward expanding future treatment options for people living with PAH.

➡Original announcement by Inhibikase Therapeutics: https://www.inhibikase.com/news/press-releases/detail/144/inhibikase-therapeutics-announces-fda-orphan-drug

19/08/2026

We fully support ELHG’s call for a coordinated European Lung Health Plan. For people living with pulmonary hypertension and other respiratory conditions, stronger prevention, earlier diagnosis, equitable access to treatment and meaningful patient involvement are essential.

🫁 Why does Europe need a European Lung Health Plan?

As a member of the European Lung Health Group (ELHG), PHAEUROPE & Global supports the call for a comprehensive European Lung Health Plan that brings together action on clean air, prevention, vaccination, early diagnosis, equitable access to treatment and care, pulmonary rehabilitation, research and innovation, investment, and meaningful patient involvement.

For people living with pulmonary hypertension and other respiratory conditions, these priorities are closely connected. Earlier diagnosis, timely access to appropriate treatment and care, rehabilitation, continued research, and policies that recognise the patient voice can directly influence quality of life and outcomes.

🎯 The new ELHG infographic explains why Europe needs a common framework for lung health and highlights the key priorities needed to transform fragmented initiatives into coordinated European action.

Now is the time to turn global commitments into meaningful action and together. 🫁💙

➡️ Read more:
https://breathevision.eu/news/why-europe-needs-a-european-lung-health-plan-new-infographic/

🔗 Original ELHG post:
https://www.linkedin.com/posts/europeanlunghealthgroup_why-europe-needs-a-european-lung-health-plan-activity-7488179794799456256-ymUA

18/08/2026

💙 Without You, There Would Be No Us

Many journeys through pulmonary hypertension are carried by many hands.

For Barbara Malinowska from Poland, this means the family, friends and medical professionals who helped her through the hardest time of her life and gave her the strength to keep fighting.

“Illness takes away your strength, but your presence, love and support gave me the power to fight. Thanks to you, I survived the hardest moments.

To my whole family - thank you for your prayers, for being there and for believing in me when I lost my own faith.

To my beloved sister-in-law, Renata - thank you for being close to me, for every kind word and for your invaluable help in the darkest moments.

To my dear daughter, Amelia - thank you for your love, patience and strength. You were my biggest motivation to never give up. You are my whole world.

To my wonderful friends, especially Gosia and Justyna - thank you for never letting me feel lonely. Your presence, phone calls and selfless help showed me what true friendship means.

I also send my heartfelt thanks to the doctors and medical staff who guided me through this difficult journey and made this miracle happen: the 1st Department of Cardiology in Katowice, Prof. Grzegorz Kopeć, Dr Katarzyna Rutkowska and the Cardiac ICU at ŚCCS in Zabrze, and the entire Lung Transplantation Staff.

Your amazing skills, dedication and determination gave me a second life.

Special thanks also go to the nursing team and medical care assistants for their gentle and constant care during my recovery, and to the physiotherapists for their patience, motivation and help with every step back to health.

Thank you for fighting for me. Your dedication, professionalism and big hearts will stay in my memory forever.”

🙏🫶💪Thank you, Barbara, for sharing such a heartfelt message of gratitude to everyone who stood beside you, cared for you and helped give you a second life.

Polskie Stowarzyszenie Osób z Nadciśnieniem Płucnym i Ich Przyjaciół 💙

Adresse

Wilhelmstrasse 19
Wien
1120

Telefon

+4314023725

Webseite

http://www.phaeurope.org/

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