In November 2023, the PH community once again convened in the beautiful city of Barcelona for the Annual PH European Conference (APHEC). This event brought together not only the PHA Europe staff and board but also two representatives from most of our 37 member associations.

It was a heartwarming family reunion set against the backdrop of the stunning Barcelona surroundings.

Before the official conference proceedings, we held a meeting with the association’s fellows. These dedicated individuals act as intermediaries between PHA Europe and our member associations, providing invaluable translation and facilitating smoother communication. Additionally, they assist the associations with various tasks, such as organizing events for World PH Day. The fellow meeting was a resounding success, leading us to consider making it a regular feature during future APHEC gatherings.

During the first official day of the conference, we conducted our General Assembly Meeting (GAM). This important session featured presentations of the financial figures from the previous year and the upcoming budget. Our staff members presented an activity report, and board elections took place. We are delighted to welcome two new board members: Nina Kobler as Vice Secretary and Katica Mavračić as our newly elected auditor, succeeding Danijela Pesic and Monika Tschida, respectively. Furthermore, during the GAM, PHA Europe unanimously approved the inclusion of four new associated members: Argentina, China, Germany, and Japan. With their addition, our PHA Europe family has now grown to 37 member associations.

The subsequent two days were dedicated to our industry partners and PH specialists. The industry partners shared insights into their programs and clinical trials. This was of particular interest to PH leaders, given the exciting prospect of several new and potentially effective PH medications entering the market in the near future.

Our conference boasted an impressive lineup of renowned PH specialists, providing attendees with valuable insights and knowledge.

𝗣𝗿𝗼𝗳𝗲𝘀𝘀𝗼𝗿 𝗝𝗲𝗮𝗻-𝗟𝘂𝗰 𝗩𝗮𝗰𝗵𝗶𝗲𝗿𝘆’𝘀 insightful session shedded light on the dynamic evolution of PH treatments (2004-2022), focusing on improving quality of life, managing symptoms, and notably enhancing survival rates.

Delving into the clinical trial landscape, Prof. Vacherie intricately detailed the process, emphasizing ethical considerations, distinct trial types, and complex endpoints.

𝗣𝗿𝗼𝗳. 𝗝𝗶𝗺𝗺𝘆 𝗙𝗼𝗿𝗱 illuminated the patient perspective in PH. Decades of progress in diagnosing and treating PH have extended lifespans, improved health parameters, yet there’s more to do!

Prof. Ford echoed Sir William Osler’s timeless words, The good physician treats the disease; the great physician treats the patient who has the disease, emphasizing the essence of patient-centered care and the crucial integration of doctors into the patient’s perspective, further underlining that supportive care should always be multidisciplinary!

Dr. Joanna Pepke-Zaba presented the groundbreaking idea of the Pulmonary Hypertension Global Patient Survey. Collaborating with PVRI, this survey, based on the 2012 model from PHA Europe, is reshaping PH research and care globally. During her presentation, Dr. Pepke-Zaba explained the elaborate construction process, featuring a structured design in three parallel streams for patients, carers, and young patients’ caretakers.

With 2400+ responses from 74 countries, and being available in 17 languages, this survey empowers the PH community. The numbers are expected to improve even more in the months to come.

Prof. Torbicki highlighted disparities in PAH and CTEPH care between Eastern and Western Europe at the 2023 APHEC. While there’s been progress in drug accessibility, disparities persist, notably in Eastern Europe, due to limited coverage and diagnostic challenges.

Ukraine’s case underscored issues like limited reference centers and reliance on echocardiography for diagnoses, highlighting the need for comprehensive improvements.

Addressing these disparities requires improved drug access, increased awareness, and comprehensive diagnostic approaches for all patients across Europe.

𝗣𝗿𝗼𝗳. 𝗔𝗵𝗺𝗲𝗱 𝗠. 𝗞𝗿𝗶𝗺𝗹𝘆 shedded light on Pulmonary Hypertension (PH) care in 𝗦𝗮𝘂𝗱𝗶 𝗔𝗿𝗮𝗯𝗶𝗮 and the Middle East at #APHEC2023. Treatment advancements offer hope. Saudi Arabia boasts accessible therapies, including double and triple therapies, which are a standard. Ongoing research focuses on novel pathways, promising improved outcomes for patients. Notably, the majority of available and approved treatments are available in the Middle Eastern countries.

We were also thrilled to welcome the Pulmonary Hypertension Association 𝗖𝗘𝗢 𝗠𝗮𝘁𝘁 𝗚𝗿𝗮𝗻𝗮𝘁𝗼 at APHEC in Barcelona! Matt shared PHA’s incredible initiatives, driving change for pulmonary hypertension. Their workshops, collaborations with experts, and impactful publications 𝗲𝗺𝗽𝗼𝘄𝗲𝗿 𝗣𝗛 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀. Granato highlighted PHA’s advocacy, ensuring patient voices influence policymaking in USA. PHA’s journey from humble beginnings inspires unity, showing that together, we can overcome challenges posed by PH.

Lastly, dr. Gergely Meszaros from ERN-LUNG gave the audience an introduction to the organization he represents. ERN-LUNG, the European Reference Network for Rare Respiratory Diseases, is a collaborative network of healthcare professionals and centers of excellence across Europe. It focuses on improving the diagnosis, treatment, and care for patients with rare respiratory diseases, such as pulmonary hypertension and interstitial lung diseases. By fostering cooperation and knowledge sharing, ERN-LUNG aims to enhance patient outcomes and raise awareness about these conditions across Europe.

The APHEC was a great success, as always. With its impressive program and the opportunity for PH leaders to meet face to face, the conference provided a significant boost of inspiration and energy to all attendees. This renewed vigor will undoubtedly invigorate the work carried out by PHA Europe’s 37 member countries in 2024.

Hall Skaara
Staff member PHA Europe