PHAEUROPE’s annual PH European Conference (APHEC) once again brought our community together in Castelldefels, just outside Barcelona, for several days of learning, discussion, collaboration, and social connection. As in previous years, the meeting was a highlight of the PHAEUROPE calendar, offering an important forum where patient advocates, experts, and partners could meet face to face. It is worth highlighting that the entire practical organisation of the conference – including flights, transfers, accommodation, food and beverages, conference arrangements, and accounting – was handled by just two people: Tamara and Gerry. With Gerry’s 45 years of experience in the tourism industry, their joint efforts ensured that APHEC ran smoothly and professionally, allowing participants to focus fully on the programme, discussions, and networking.

Governance, transparency, and growth

The conference opened with PHAEUROPE’s General Assembly, where members and fellows gathered to review the organisation’s activities, discuss priorities, and take part in elections. Two board members were up for election, resulting in a shift within the board, and one new auditor was elected. These processes are central to ensuring transparency, renewal, and strong governance within the organisation.

An important part of the General Assembly was the staff report, which presented the work carried out since the previous APHEC. This gave members a comprehensive overview of PHAEUROPE’s advocacy, education, policy engagement, partnerships, and project activities over the past year.

The General Assembly also included a dedicated social media report, highlighting the campaigns run in recent years and demonstrating impressive reach across all major platforms. The report clearly showed how social media has become an increasingly powerful tool for awareness raising, advocacy, and community engagement for PHAEUROPE.

In addition, the General Assembly welcomed a new associated member: Sociedad Latina de Hipertensión Pulmonar, an umbrella organisation from South America. This new partnership further strengthens PHAEUROPE’s global presence and underlines the importance of collaboration beyond Europe.

Dialogue with industry partners and corporate planning

A key part of APHEC is the dedicated pharma days, during which PHAEUROPE meets with the pharmaceutical companies it collaborates with. Each partner was given one hour to present updates on research, pipelines, and developments relevant to pulmonary hypertension. These sessions allow for open dialogue and questions, helping patient representatives stay informed while also ensuring that patient perspectives and unmet needs are clearly communicated.

PHAEUROPE also used the opportunity to hold a corporate meeting with its pharmaceutical partners, during which the organisation presented its business plan for the coming year. Sponsors provided constructive feedback, reflections, and suggestions, contributing to a valuable exchange that helps strengthen collaboration and align expectations.

Education, empowerment, and new perspectives

The educational programme offered a broad range of sessions aimed at strengthening knowledge and empowerment among participants. Topics included PH-ILD, screening and diagnosis, follow-up and long-term management, and the latest scientific updates in pulmonary hypertension. PH-ILD is an area of growing importance for PHAEUROPE, as it is for many pharmaceutical companies, and reflects the increasing recognition of this patient group’s unmet needs. Continuing to include and represent people living with PH-ILD within our member associations is essential to ensuring comprehensive advocacy, equitable access to care, and a strong patient voice across the full spectrum of pulmonary hypertension.

One particularly engaging and practical session focused on echocardiography. A PH patient volunteered to undergo a live echocardiographic examination, which was performed and explained in real time by Professor Zvonimir A. Rako from the Giessen PH Center in Germany. This unique session gave participants valuable insight into how echocardiography is used in daily clinical practice to assess and monitor PH.

The scientific programme also included presentations by Professor Stefano D’Alto and Professor Hossein Ardeschir Ghofrani, both world-renowned pulmonary hypertension experts. PHAEUROPE is proud that leading specialists of this calibre take the time to join our annual meeting, share their expertise, and engage directly with the patient community.

Mental health was addressed in a dedicated session led by Dr. Beate Schrank, highlighting the psychological burden often experienced by people living with chronic and rare diseases. The session emphasised the importance of recognising mental health as an integral part of holistic PH care.

Collaboration and patient advocacy

Collaboration across borders and organisations was a recurring theme throughout the conference. A dedicated session with PH Aware and Steve highlighted opportunities for closer cooperation with patient advocates and organisations in the United States.

The programme also included a presentation from GAAPP (Global Allergy & Airways Patient Platform), showcasing their work in patient advocacy, education, and global collaboration.

Networking and social experiences

As always, APHEC was not only about formal sessions. Informal discussions during breaks, meals, and social activities created valuable opportunities for networking, peer support, and the sharing of lived experiences.

The programme also included a sightseeing excursion to Barcelona, led by a highly humorous and engaging guide. Beyond offering insight into the city’s history and culture, the excursion provided a relaxed and enjoyable setting that strengthened the sense of community and “family feeling” among participants – an important part of what makes APHEC special.

Looking ahead

The conference also included internal planning sessions focused on PHAEUROPE’s future activities and priorities. Together with staff, partners, and member representatives, participants reflected on upcoming challenges and opportunities.

Once again, Castelldefels proved to be an ideal setting for PHAEUROPE’s annual meeting — combining strong governance, high-quality education, strategic dialogue, and a warm, inclusive atmosphere.