The Alpha-1 Europe Alliance successfully held its 3rd Annual General Assembly, bringing together member organisations, Board members, and team collaborators. The online gathering held on June 17th served as a moment to reflect on the accomplishments of 2024, and to collectively shape the vision and strategic direction for 2025.
Reflecting on progress and looking ahead
The Assembly opened with a warm welcome from Fernanda Aspilche Ferro, President of the Alliance, who extended heartfelt thanks to all member organisations for their continued trust, engagement, and support. A special recognition was given to the Board, staff, and the dedicated individuals involved in the Alliance’s working groups, whose contributions are helping shape the future of Alpha-1 advocacy in Europe.
2024: A first year of meaningful progress
Board Member Cristina Barbiero presented a report on the Alliance’s key activities in 2024, structured around its main strategic priorities:
- Community-Building & Patient Group Support
- Communication & Dissemination
- Awareness Raising
- Representation of the European Alpha-1 Community
- Governance & Organisational Capacity
These initiatives have strengthened the Alliance’s role as a unified voice for Alpha-1 organisations and patients across Europe.
Action Plan 2025: Advancing together
The 2025 Action Plan was introduced by President Fernanda Aspilche Ferro, alongside Jill Bonjean (Coordinator) and Lila Martínez Ucha (Communications Manager). The plan continues to build on the established strategic streams, with a focus on reinforcing collaborations, elevating patient voices, and supporting national advocacy efforts.
In 2025, two strategic pillars were added: Political Advocacy and Research & Care Pathway Development.
- Political Advocacy: Advocacy efforts will include EU stakeholder mapping, enhanced EU outreach in Brussels, and the launch of a Roadmap 2025–2030 to guide long-term policy engagement.
- Research & Care Pathway Development: The Alliance will strengthen its role in research and care by applying to relevant projects, collaborating with reference bodies and establishing a Medical Advisory Board. It will also seek EMA stakeholder status and support initiatives that promote meaningful patient involvement in regulatory decision-making.
“In the second half of the year, we’ll continue to work with determination to deliver our policy strategy and complete the roadmap, always guided by the needs of our members and the Alpha-1 community.”
Financial review and planning
Elena Goyanes Vilar, Treasurer of the Alliance, presented the audited financial reports for 2023 and 2024, as well as the budget draft for 2025.
A special thanks was extended to Danny Pinto, President of the Fiscal Council and representative of AA1P, for his professionalism and commitment in overseeing the audit process.
The floor was opened for questions and discussion regarding both the activities and financial reports.
Alha-1 Europe Alliance is grateful to everyone who participated and contributed to this important milestone. The outcomes of this Assembly reinforce our shared commitment to building a stronger, more connected Alpha-1 community across Europe.
We are proud to stand alongside patient organisations, working together to amplify their impact and ensure our collective voices shape a more inclusive and patient- centred future in care and policy.
