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

09/11/2025

Thank you, Hall Skaara, for providing invaluable content and expertise that added great academic value to APHEC 2025 and enriched the experience for patients, advocates, and healthcare professionals alike.

Thanks to Gerry Fischer for his outstanding organization of the conference, bringing his 45+ years of experience in the tourism industry to ensure APHEC 2025 ran smoothly, successfully, and memorably.

Your dedication, knowledge, and tireless efforts have left a lasting impact on the European and global PH community. 🙏💙 👏

09/11/2025

PHAEurope Annual PH European Conference (APHEC) 2025 | Castelldefels, Barcelona 🇪🇸 – Final Days |

The final two days of APHEC 2025 were devoted to advancing scientific knowledge, strengthening collaboration, and celebrating the unity and dedication of the global PH community.

💙 Expert Insights and Research Highlights
Day 3 featured a series of expert lectures by eminent PH specialists and researchers. Italian professor Michele D’Alto delivered an educational presentation on screening for pulmonary arterial hypertension (PAH) in patient groups with an increased risk—such as those living with systemic scleroderma, systemic lupus erythematosus, mixed connective tissue disease, rheumatoid arthritis, HIV infection, congenital heart defects, and chronic hemolytic anemias.

German professor Ardeschir Ghofrani followed with an in-depth session on advances in PAH treatment, covering side effects, risk–benefit considerations, and the impact of prostacyclin on heart function. A detailed summary of these and other scientific sessions will be featured in PHA’s November newsletter.

💎 Practical Sessions and Collaborative Learning
Participants took part in interactive workshops and a course in positive psychology, emphasizing the importance of mental well-being in people living with pulmonary hypertension.

One of the conference highlights was a live echocardiography demonstration, performed and explained in detail by Rako Zvonimir, researcher at the University Hospital of Giessen (Germany). We extend special thanks to PH patient and conference co-organizer Hall Skårå, who courageously volunteered as the live model for this session.

🌍 Global Collaboration and Innovation
APHEC 2025 continued to strengthen ties with partner organizations such as the Global Allergy & Airways Patient Platform (GAAPP), with which we share a unified vision of improving patient care and advocacy worldwide. Victor Gascon, Vice President of GAAPP, presented the platform’s work and its growing influence in the respiratory community.

PHAEurope was also honored to host Steve Van Wormer (USA), Co-Founder and Managing Director of the phaware® Global Association, who introduced the innovative Heart Works – phaware® app. Designed for PH patients, healthcare professionals, and caregivers, the app provides valuable tools for education, awareness, and support—and is now available for both Android and iOS users.

🫁A Heartfelt Closing
The conference concluded with a memorable gala dinner and the special presentation of the “Without You, There Would Be No Us” video—featuring heartfelt testimonials from PH patients expressing gratitude to their caregivers, physicians, researchers, associations, and industry partners for their unwavering dedication, care and support.

PHAEurope extends its deepest thanks to all our distinguished speakers—Beate Schrank, Ardeschir Ghofrani, Rako Zvonimir, Michele D’Alto, Victor Gascon, Mona Lichtblau, and Steve Van Wormer—as well as to our member associations, patient advocates, and industry partners for their commitment, collaboration, and passion.

Together, we continue to advance awareness, research, and care for the global PHamily. 💙

I'm Aware That I'm Rare: the phaware podcast Global Allergy & Airways Patient Platform

08/11/2025

PHAEUROPE would like to extend heartfelt thanks to Eva Otter, Tamara Keri, and Maleen Fischer for their unwavering commitment to our organization and mission. Their tireless work in organizing the Annual PH European Conference (APHEC 2025), coordinating our member associations, patient advocates, delegates, pharma partners, and all our esteemed guests and expert speakers, reflects exceptional dedication and professionalism.

Their perseverance, passion, and constant drive to make a positive impact in the PH community are truly inspiring.

Thank you, Eva, Tamara, and Maleen for everything you do. 🙏💙 👏

08/11/2025

PHAEurope Annual PH European Conference (APHEC) 2025 | Castelldefels, Barcelona – DAYS 2&3 |

Busy days in Castelldefels for the 2025 Annual PH European Conference! At the start of November, APHEC gathered over 75 delegates from 40 member associations across 35 countries as well as our pharma partners and expert speakers.

Day Two focused on PHAEurope’s pharma partners, who presented the latest advancements in treatments and medicines for various forms of pulmonary hypertension, with special attention to new drugs and innovative therapies currently under investigation. The day also featured clinical trial presentations and insights from leading experts in medical technology and the pharmaceutical industry.

PHAEurope was pleased to host representatives from AllRock Bio, AOP/Orphacare, Chiesi, Ferrer, Gossamer Bio, Liquidia, MSD, and Pulmovant.

The enthusiasm and interest of our member associations were at a high level, thanks to the informative and engaging presentations by our pharma guests.

Thank you — without you, there would be no us. 💙

07/11/2025

PHAEurope Annual PH European Conference (APHEC) 2025 | Castelldefels, Barcelona 🇪🇸 – DAY 3 | - Thank you, team Pulmovant!💙🙌

PHAEurope is pleased to host the Pulmovant team at our Annual PH Conference – APHEC 2025 in Castelldefels, Barcelona. Pulmonary hypertension patients and advocates are always eager to learn more about advanced treatments from pharmaceutical representatives, as each new breakthrough in therapy means life.

Thank you — without you, there would be no us. 🙏

07/11/2025

PHAEurope Annual PH European Conference (APHEC) 2025 | Castelldefels, Barcelona 🇪🇸 – DAYS 1&2 |

Once again, PHAEurope, the umbrella organization for pulmonary hypertension (PH) associations across Europe and beyond, proudly hosted its Annual PH European Conference (APHEC) in Castelldefels, Barcelona—a place that has become a true home of connection, collaboration, and inspiration for the PH community.

This year’s APHEC brought together representatives from 40 member associations across 35 countries, alongside medical experts, researchers, and key stakeholders—united by one shared mission: to strengthen the voice of PH patients in Europe and worldwide.

During Days 1 and 2, delegates took part in strategic discussions, interactive workshops, and educational sessions focused on capacity building, advocacy, and access to care, with pharmaceutical representatives sharing the latest breakthroughs in treatments and medicine. The conference reaffirmed PHAEurope’s core mission: to empower, educate, and connect patient associations so they can continue driving meaningful change in their respective countries.

The General Annual Meeting (GAM), held during the conference, marked an important milestone with the election of a new PHAEurope Board. The new leadership team will guide the organization with dedication and a renewed vision for growth, unity, and global impact.

Building on past achievements, PHAEurope & Global will take the organization to the next level—broadening its scope, enhancing activities, and embracing a global perspective. With renewed purpose and stronger determination, PHAEurope continues to advance its shared mission: improving the lives of people living with pulmonary hypertension everywhere. 💙🌍

Thank you all for being with us! PHamily, always!💙💪🙌

07/11/2025

💙 Ayotunde’s Story | Nigeria 🇳🇬

“Access means life, and everyone deserves access to life—no matter where they live.”

I have lived with pulmonary hypertension for 12 years. Just surviving this long feels like a miracle, especially after years of being on and off treatment because I simply couldn’t access my medicine. With PH, consistency in therapy and medication is vital. Taking treatment every day and having access to holistic care is what keeps a patient able to live a functional life.

During COVID-19, it was especially hard. I used to get my medication from India, but when the borders closed, I couldn’t get my drugs. My health deteriorated quickly—every breath was a struggle, my heart raced even at rest, and I had frequent infections and flares. It was one of the hardest periods of my life.

I’ve met others who had to travel long distances or cross borders just to get their medications. Lately, I can access some drugs in Nigeria, but the options are very limited. If a treatment doesn’t work for a patient here, there is often no alternative.

In countries with stronger health systems, PH patients have more treatment options and better care. We hear about amazing advancements in treatment, yet in Africa, we still struggle: supply is limited, there is no local production, and prices are often beyond reach. I have seen how the lack of access takes lives. That is the painful reality we face.

This Pulmonary Hypertension Awareness Month, I want to stress that access is not a luxury—access is life. We deserve the same chance to breathe, to live, and to hope. 💜

06/11/2025

🌍 PHAEurope Annual Conference - APHEC 2025 | Castelldefels, Barcelona 🇪🇸 | Day One |

At the Annual Pulmonary Hypertension European Conference (APHEC) in Castelldefels, Barcelona—organized and hosted by PHAEurope, the European and global umbrella association uniting PH associations and PH patients—representatives from 40 member associations across 35 countries, pharma representatives and distinguished PH experts and our guest speakers came together once again to connect, learn, and empower one another.

This year, the General Annual Meeting (GAM) convened during the APHEC and elected the new Board, which will lead our ever-growing PHamily with dedication, collaboration, and heart.

PHAEurope Board 2025–2027

🔹Zdenka Bradač – President
🔹Eva Otter – Vice President
🔹Tuulia Nikulainen – Treasurer
🔹Tadeja Ravnik – Vice Treasurer
🔹Natalia Maeva – Secretary
🔹Vittorio Vivenzio – Vice Secretary
🔹Peter Baarnhielm – 1st Auditor
🔹Bogdan Burduja – 2nd Auditor

👏💪🙌💙

PHAEurope is proud to have a diverse and deeply committed Board, made up of PH patients and advocates from across Europe - each bringing unique experience, expertise, and passion to our shared mission: improving the lives of everyone affected by pulmonary hypertension.

06/11/2025

💙 Anamaria’s Story | Romania 🇷🇴

When I first started struggling with my breathing, pulmonary hypertension was almost completely unknown in Romania. I am Anamaria Bașa, later called the “miracle of Timișoara,” and I became the first person in the country diagnosed with PH. At 24, even though I had been a competitive athlete, I could barely walk. It took months of searching before I finally got a diagnosis at the Institute of Cardiology in Timișoara.

Doctors told me: “Your tests look like those of a person in a coma. “I’m surprised you’re walking, or even alive.” Still, I kept moving, step by step, relying on faith and determination. I say, “I am dependent on God, and that is why I am alive. I am grateful for every day, every breath, every step - even when I fall. I still can speak and tell my story. Others don’t have that opportunity, so I focus on what I do have.”

Even now, after trying all therapies covered by insurance, my body often rejects them. Simple things are a struggle: I can shower, but I need help dressing or cooking. Every day is a small victory.

I know I am not alone in this fight. Viorela, a lawyer and PAH patient from Constanța, puts it into words for both of us: “It’s an invisible disease. Many people don’t understand that there’s nothing you can do about it. I’m lucky to still be alive.” Thanks to a new medication—donated by the manufacturer because it isn’t covered by insurance—Viorela can work and live more fully. I, however, still don’t have a solution or a proper therapy, and every day reminds me how vital access to treatment is.

It’s a miracle that I’m alive, but access to treatment and advanced therapies should not depend on miracles. 💜

05/11/2025

💙 Natalia’s Story | Bulgaria 🇧🇬

My journey with pulmonary hypertension began in 2009. In Bulgaria, I was diagnosed within just one week—a rare stroke of luck in an otherwise slow healthcare system. The first two years were incredibly challenging. Treatment was expensive and mostly inaccessible, and I had to pay for it myself. I was determined not to let the disease defeat me.

In 2011, there was a breakthrough: the National Health Insurance Fund started reimbursing two essential medications for PH patients. It was a major step, but not the end of the struggle. Over time, my dual therapy stopped working. Doctors recommended a third, major medication—which is still unapproved in Bulgaria.

I refused to give up. I found a way to access this medicine in Greece, bridging me to the next life-saving step: a successful double lung transplant, performed in Vienna in March 2016.

Today, I am a product of three healthcare systems - Bulgarian, Greek, and Austrian. Thanks to this journey, I can live a normal life, fully integrated into the labor market, and help other patients so they don’t have to walk this path alone.

Over time, I’ve become a “wise giraffe,” observing from above but knowing the cost of every battle with the healthcare system and the struggles when access to treatment is limited. Change is possible when we refuse to give up and build bridges, not walls. Access in other countries saved me when treatment was unapproved in my state. 💜

05/11/2025

💙 November 5: A Day of Global Solidarity for PH Awareness and PH Patients

On November 5, echoing May 5 – World Pulmonary Hypertension Day (WPHD), PHAEurope proudly joins PHA US in raising awareness of pulmonary hypertension and in emPHasizing the vital importance of well-being and access to care. Access to timely diagnosis, treatment, and proper medical support is not just healthcare, it is the foundation of a dignified life for everyone living with PH and its severe, chronic, and often devastating effects.

For people with PH, treatments, specialized care, and medication mean life itself—they make all the difference between isolation and inclusion, decline and stability, despair and hope.

While certain types of PH are rare, pulmonary hypertension overall is one of the most common conditions among rare diseases. The most frequent cause of PH worldwide is left heart disease, with studies showing that 30–60% of people with left heart disease also develop PH. As the number of individuals with left heart disease has doubled in recent years, PH has become an increasing global health burden, affecting patients, families, and healthcare systems alike—with tremendous impact in developing countries, where therapies and access to treatment are not equally available to patients.

💙 Together, we raise our voices to ensure that every person living with PH—wherever they are—has equitable access to care, understanding, and hope.

📢Let’s also emPHasize the vital role of patient associations and collaboration, the importance of patient-reported outcomes and advocacy, and the ongoing efforts in PH research and clinical trials — all essential to advancing care and improving lives of people with pulmonary hypertension (PH).

Pulmonary Hypertension Association 🤝

05/11/2025

🔎Pulmonary hypertension (PH) often hides in plain sight. Its multifaceted symptoms overlap with many other conditions, mimicking asthma or less serious illnesses. Because many patients appear healthy on the outside, the true reality of life with PH is often overlooked or misunderstood.

While knowing the percentage of symptoms can help raise awareness, insufficient knowledge about PH among general practitioners still prevents timely referrals to specialized PH centers for further evaluation, diagnosis, and treatment.

Common symptoms experienced by PH patients:
• 13% fast heart rate or palpitations
• 15% dizziness or fainting
• 21% swelling of ankles
• 22% chest pain
• 27% fatigue
• 86% breathlessness

On average, almost two years pass from the first symptoms to an accurate diagnosis, after numerous doctor visits, misdiagnoses, and disbelief from others. Without proper treatment, the average life expectancy of a person with PH is only about 2.8 years.

Because every day without access to the right care costs time — and for PH patients, access means life. 💙

Pulmonary Hypertension Association Europe

09/11/2025

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