Pulmonary Hypertension Association Europe

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Pulmonary Hypertension Association Europe

PHA Europe is the European umbrella organization for pulmonary hypertension. PHA Europe has 40 member associations from 33 European countries.
(1)

It was founded in 2003 and is registered in Vienna, Austria, as an international non-profit organization.

01/03/2026

At PHAEurope, our mission remains clear: to improve the lives of all pulmonary hypertension (PH) patients through earlier diagnosis, better treatment, improved quality of life, and ultimately, a cure. Rare Disease Day is a reminder of why we stay committed—because patients must always be at the center of research, innovation, and healthcare decision-making.

🩵 🔎Over the past year, PHAEurope has taken concrete steps to advance the PH community: contributing to the World Symposium on PH and key international congresses, leading the publication of the first paper capturing patient perspectives, and advocating for the recognition of patient-reported outcomes as essential in treatment development. We are proud that patient associations are now acknowledged as vital partners in shaping the future of care.

By uniting associations, patients, and decision-makers, we ensure that PH, rare forms of PH, and rare diseases more broadly gain the visibility they deserve, leaving no patient behind. Collaboration is the key to progress, and by amplifying the patient voice, we pave the way for more inclusive research, faster diagnoses, and improved access to innovative treatments.

Your support makes this possible. Together, we can change the future for everyone living with PH, one of the rare forms of PH, or one of the 7,000 rare diseases.
💙💜💚

Discover the change PHA Europe is making for pulmonary hypertension patients.
➡www.phaeurope.org

28/02/2026

🔎🫁 With over 7,000 rare diseases, 95% still have no approved treatment, and many potential therapies remain in research or clinical trials, often with limited access, making the chance at life too often limited. The pulmonary hypertension (PH) community is deeply grateful to researchers, medical experts, and all stakeholders, as the past decade has seen remarkable progress in treatment development for most forms of pulmonary hypertension—proof that hope and the dream of a cure are very much alive.

Advances in targeted therapies have improved prognosis, particularly in PAH and CTEPH, but PH remains a life-threatening condition with significant morbidity and mortality, underscoring the need for ongoing research, multidisciplinary care, and patient-centered management strategies. Every advancement improves outcomes, quality of life, and reduces mortality, showing why ongoing innovation and advocacy are more important than ever. 💙💜💚

Discover the change PHA Europe is making for pulmonary hypertension patients.

➡www.phaeurope.org
➡Sources: https://bit.ly/4ruO3T0
rarediseaseday.org/what-is-a-rare-disease/

28/02/2026

Today is Rare Disease Day 2026.💙💜💚

People living with rare diseases are pioneers - bold, resilient, and courageous. They navigate a world where answers are scarce, access to care is uncertain, and every day is a battle against the unknown. Like sailors in uncharted territories, they have no maps, no compasses, only their bravery to guide them. For many, this journey begins at birth, as ~80% of rare diseases are genetic. Diagnosis remains a challenge, and when treatment exists, it is often prohibitively expensive.

The pulmonary hypertension community understands these challenges firsthand. Today, PHAEurope proudly stands with all rare disease patients, raising awareness, advocating for access to care, and amplifying the voices of those who navigate life without certainty.

Rare is brave. Rare is visible. Rare deserves better. 💙💜💚

Discover the change PHA Europe is making for pulmonary hypertension patients.

➡www.phaeurope.org
➡Source: rarediseaseday.org/what-is-a-rare-disease/

27/02/2026

🔎🫁 In low- and middle-income countries, 8 out of 10 PH patients go undiagnosed. Many people who are diagnosed still receive outdated treatments, and specialized centers are scarce or nonexistent. Yet access to PH experts and specialized centers capable of providing holistic care is vital for the effective treatment of people with PH (and especially for rare forms of PH) and many other rare diseases. The challenge goes beyond recognizing a rare disease: systemic gaps in healthcare, lack of awareness, and limited access to experts leave patients extremely vulnerable.

PH doesn’t wait - and neither can we. Awareness, timely diagnosis, and equitable access to care are essential to save lives worldwide. This is reality, and it’s more urgent than most realize. Urgency must unite us all. 🌍🦓

Discover the change PHA Europe is making for pulmonary hypertension patients. ➡www.phaeurope.org

➡Source: https://pmc.ncbi.nlm.nih.gov/articles/PMC7225434/
https://pubmed.ncbi.nlm.nih.gov/40971086/

27/02/2026

In medicine, doctors are often taught: “When you hear hoofbeats, think horses, not zebras.” This means that common conditions are usually the first explanation for symptoms.🔎🦓

But for rare disease patients, including those with rare forms of pulmonary hypertension (PH) - the zebra represents exactly the opposite: the uncommon, the overlooked, the life-changing conditions that are rare, often invisible, and easily missed even despite the apparent and very noticeable stripes.

The zebra reminds us that behind subtle symptoms can lie serious, life-limiting conditions. For PH patients, early recognition can mean the difference between timely treatment and severe complications.

On Rare Disease Day, we honor zebras everywhere: the rare, the resilient, the ones who need awareness to be seen. And when the zebra is finally seen, hope blooms and the black stripes get colored in so many different colors of life. For our community zebra is more than a symbol, it is a reality.🦓 💙💜💚

Discover the change PHA Europe is making for pulmonary hypertension patients.
➡www.phaeurope.org

26/02/2026

🫁💙 Pulmonary Hypertension (PH), and especially rare forms of PH are invisible, life-limiting, chronic, and progressive.

Without timely and proper treatment, PH can lead to severe complications and poor prognosis. Many patients feel and appear healthy until symptoms suddenly worsen, making early recognition and specialized care absolutely critical.
Some forms of PH may be rare, but its impact is profound - on the heart, lungs, and every aspect of life, for both patients and caregivers. Awareness, diagnosis, and access to treatment can change the course of this condition and save lives.
What makes PH even more dangerous is that its symptoms often mimic other, far less serious conditions. Blue lips, fatigue, and breathlessness are just some of the signs—but who remembers to think of zebras when they hear hoofbeats?

🦓 💙💜💚

Discover the change PHAEurope is making for pulmonary hypertension patients.
➡www.phaeurope.org

26/02/2026

📢𝗨𝗽𝗱𝗮𝘁𝗲 𝗼𝗻 𝘁𝗵𝗲 𝗣𝗵𝗮𝘀𝗲 𝟯 𝗣𝗥𝗢𝗦𝗘𝗥𝗔 𝘀𝘁𝘂𝗱𝘆 𝗼𝗳 𝘀𝗲𝗿𝗮𝗹𝘂𝘁𝗶𝗻𝗶𝗯 𝗶𝗻 𝗽𝘂𝗹𝗺𝗼𝗻𝗮𝗿𝘆 𝗮𝗿𝘁𝗲𝗿𝗶𝗮𝗹 𝗵𝘆𝗽𝗲𝗿𝘁𝗲𝗻𝘀𝗶𝗼𝗻 (𝗣𝗔𝗛)

Topline results from the Phase 3 PROSERA study have now been released. The study narrowly missed its primary endpoint of improvement in 6-minute walk distance (6MWD) at week 24. This outcome appears to have been influenced in part by an unexpectedly large improvement in walk distance in the placebo group, particularly in certain geographic regions, which reduced the measurable difference between the treatment and placebo arms.

However, the results also showed several encouraging findings. Key secondary endpoints favored seralutinib, including significant reductions in NT-proBNP, improvements in clinical status, and reductions in risk scores, all of which are important indicators of disease severity and progression.

The study also showed meaningful treatment effects in patients with intermediate and high-risk disease. These findings reinforce what was previously observed in the Phase 2 TORREY study and suggest that seralutinib may have particular benefit in patients with more advanced disease. The data in this intermediate and high-risk population also suggest a continuous and increasing treatment effect over time compared with placebo.

Importantly, the open-label extension study will continue, allowing patients to remain on treatment while further data are collected. The company has announced plans to continue analyzing the data and to engage with regulatory authorities to determine next steps.

We will continue to monitor developments closely and share updates as more information becomes available.

➡Read more: https://ir.gossamerbio.com/news-releases/news-release-details/gossamer-bio-announces-topline-results-phase-3-prosera-study

25/02/2026

🦓Not all rare diseases are alike, but there is a common thread that binds them all: every person with a rare disease deserves 100% support and equal access to treatment and care.

🔎More significantly, over 50% of rare disease patients are children. Misdiagnosis and delayed care affect more than 30% of patients, often leading to complications that could have been prevented with timely intervention.

Recognition is half the treatment. Raising awareness, improving diagnosis, and ensuring access to care can save lives - because every patient matters.
💙💜💚

Discover the change PHA Europe is making for pulmonary hypertension patients. ➡www.phaeurope.org

24/02/2026

🔎🫁🦓 Did you know that over 70 rare diseases can lead to pulmonary hypertension (PH)?

Conditions like scleroderma, hereditary hemorrhagic telangiectasia (HHT), idiopathic pulmonary fibrosis, sickle cell disease, and lupus create complex challenges for patients. Treating the primary condition is already difficult, and when PH develops on top of it, the challenge becomes even greater.
PH can also appear in certain congenital heart diseases, systemic autoimmune conditions, and rare blood disorders, showing just how diverse and interconnected rare diseases can be. Many rare conditions have a genetic component, and for some patients, challenges begin early in life. In pulmonary hypertension, particularly pulmonary arterial hypertension (PAH), genetics play an important role. Heritable PAH accounts for approximately 2–4% of all PAH cases, most commonly linked to mutations in the BMPR2 gene. In addition, around 20% of idiopathic PAH (IPAH) patients—despite having no known family history—also carry underlying genetic mutations, with BMPR2 being the most frequently identified. This Rare Disease Day, remember: when you hear hoofbeats, think zebras, not horses. PH is a true medical zebra. Raising awareness of these rare links can truly save lives. 💙💜💚🦓

Discover the change PHA Europe is making for pulmonary hypertension patients.

➡www.phaeurope.org
➡Source: https://pmc.ncbi.nlm.nih.gov/articles/PMC4137413/

23/02/2026

🔎🫁 PAH in children is especially difficult to diagnose. Early symptoms such as shortness of breath, fatigue, poor growth, and fainting are often mistaken for asthma, infections, or normal childhood limitations. As a result, diagnosis is frequently delayed, allowing the disease to progress silently.

Treatment options for children with PAH are limited. Many therapies are developed and approved for adults first, leaving children dependent on off-label use, complex dosing, and fewer evidence-based options. Access to specialized pediatric PH centers remains uneven across regions.

PAH places a lifelong burden on children, affecting education, development, and everyday childhood experiences, while families face emotional, medical, and financial strain.

On Rare Disease Day, we shine a light on children living with PAH. 💙💜💚

Discover the change PHA Europe is making for pulmonary hypertension patients.
➡www.phaeurope.org
➡Source: https://pmc.ncbi.nlm.nih.gov/articles/PMC5448526/

20/02/2026

Happy to share this exciting milestone for the European PH community 💙
Together with the Alliance for Pulmonary Hypertension🤝and in collaboration with -LUNG - European Reference Network for rare respiratory diseases🤝, we are proud to launch the PH Expert Patient Academy (PHEPA). ⤵️

20/02/2026

Pulmonary hypertension does not discriminate by age, gender, lifestyle, or background. It affects children, young adults, parents, and grandparents. It often hides in plain sight, while lives quietly change. This is true for all 5 types of PH.

This Rare Disease Day, we raise our voices to say:
Rare does not mean unlikely.
Rare does not mean insignificant.
And rare must never mean forgotten.
Awareness saves time. Early diagnosis saves lives.
Stand with the pulmonary hypertension community. 💙💜💚

Discover the change PHA Europe is making for pulmonary hypertension patients.

➡www.phaeurope.org
➡Sources: https://bit.ly/3OmWf9B

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