REFLECTING ON A YEAR OF ADVOCACY, COLLABORATION, AND PATIENT VOICES

Dear Friends,

2025 has brought us many remarkable moments, and it is a pleasure to reflect on a year marked by strong advocacy, meaningful collaboration, and a continued commitment to ensuring that the voices of people living with pulmonary hypertension (PH) are heard wherever decisions are made. This winter edition of Mariposa looks back on a year in which PHAEUROPE remained highly active across scientific, policy, and patient advocacy arenas – always with patients at the centre.

One of the cornerstones of our year was, once again, the Annual PH European Conference (APHEC), held in Castelldefels, just outside Barcelona. APHEC continues to be a key meeting point for PHAEUROPE, bringing together member associations, patient advocates, experts, and partners for several days of learning, dialogue, and exchange. This year’s meeting included our General Assembly, important governance processes, strategic discussions, meetings with our pharmaceutical partners, and a strong educational programme covering topics such as PH-ILD, diagnosis and follow-up, mental health, and the latest scientific developments in PH. A dedicated article in this issue provides a more detailed overview of APHEC 2025.

Throughout the year, PHAEUROPE also maintained a strong presence at major European and international conferences and policy forums. We contributed the patient perspective at events in the European Parliament and participated in key scientific and professional meetings, including ERN-LUNG activities, specialist PH conferences, global PH symposium updates, and major respiratory and patient congresses. These engagements help ensure that patient experiences and priorities are reflected in research, clinical practice, and health policy. A comprehensive conference report later in this issue highlights these activities in more detail.

World Pulmonary Hypertension Day (WPHD) remained an important moment of global awareness and solidarity in 2025. While WPHD is covered in greater depth in the summer edition of Mariposa, it is worth noting once again the collective impact of patient-led awareness activities across regions and continents. World Pulmonary Hypertension Day (WPHD) in May and Pulmonary Hypertension Awareness Month in November were both key moments in PHAEUROPE’s 2025 awareness activities. The WPHD campaign focused on the importance of early diagnosis, while PHAEUROPE’s contribution to Awareness Month was a campaign that highlights the ongoing need to improve access to treatment for people living with pulmonary hypertension.

Another area of significant progress in 2025 was social media and digital engagement. PHAEUROPE’s social media activities reached new levels this year, with strong growth in reach and engagement across all platforms. Awareness campaigns, advocacy messages, educational content, and patient stories contributed to increasing visibility for pulmonary hypertension and strengthening connections within and beyond the PH community. The social media report included in this issue provides further insight into this work.

It is also important to recognise that all of these activities were delivered by a very small team. In 2025, the work of PHAEUROPE was carried out by just four staff members. On behalf of the organisation, I would like to extend my sincere thanks to them for their hard work, professionalism, and dedication throughout the year. Their commitment has been instrumental in ensuring that PHAEUROPE continues to deliver meaningful impact across a wide range of activities.

Underlying everything we do is a strong commitment to collaboration – across borders, disciplines, and organisations. In 2025, PHAEUROPE continued to strengthen partnerships within Europe and beyond, welcoming new associated members and expanding its global connections. These collaborations help broaden perspectives, amplify patient voices, and ensure that our work reflects the diversity of experiences within the PH community.

As you turn the pages of this winter edition of Mariposa, we hope it provides a clear picture of PHAEUROPE’s activities over the past year and the many ways in which patients, advocates, experts, and partners continue to work together to improve care, access, and quality of life for people living with pulmonary hypertension.

The journal is available from here: Mariposa Journal – 2025 Winter N.35

With warm regards,

Zdenka Bradac
President, PHAEUROPE