As the Alpha-1 Europe Alliance (A1EA) celebrates its second anniversary, we spoke with Fernanda Aspilche Ferro, one of the driving forces behind the organization, to reflect on its achievements, the strength of its community, and the road ahead.
Looking back: Building a strong foundation
When asked about the key milestones of the Alliance’s first two years, Fernanda shared:
“We started by laying the groundwork—establishing the organization and building solid operational foundations. That was essential to grow sustainably and represent the Alpha-1 community effectively.”
A standout moment was the first in-person event in Brussels, which Fernanda describes as “a real turning point for community building.” It brought together patient organizations, advocates, and stakeholders from across Europe, setting the stage for future collaboration.
A1EA has also made its mark in the broader rare disease ecosystem.
“We’ve actively participated in key European discussions, from the SoHO Regulation to the Alpha-1 Foundation Congress, IPPC, and EURORDIS meetings,” Fernanda notes. “These platforms have helped us raise awareness and advocate for better policies.”
Another major achievement has been the launch of a comprehensive communications strategy:
“We’ve run awareness campaigns and built a strong social media presence to make Alpha-1 more visible. It’s about ensuring people understand what Alpha-1 is and why it matters.”
The power of community
Today, the Alpha-1 Europe Alliance represents a vibrant and growing network.
“We now have 13 member organizations across 14 countries,” Fernanda shares. “Recent additions like Alpha-1 Ireland, Alpha-1 Norden, and Longfonds show that our reach is expanding.”
With over 90% of European Alpha-1 organizations represented and more than 4,500 people with Alpha-1 Antitrypsin Deficiency (AATD) included, the Alliance is more than just numbers:
“It’s a passionate, engaged, and committed community. We have a strong volunteer base working at both European and national levels. That energy is what keeps us moving forward.”
Looking ahead: Strategic goals for the future
As the Alliance looks to the future, its work is guided by seven strategic workstreams:
- Community-building & Patient Group Support
- Communications & Dissemination
- Awareness-building
- Representing the European Alpha-1 Community
- Political Advocacy
- Research & Care Pathways
- Governance & Organisational Capacity
“These pillars help us stay focused and ensure that our efforts are aligned with the needs of the community,” Fernanda explains. “Each workstream plays a role in improving diagnosis, care, and access to treatment.”
Challenges and opportunities in Europe
Despite the progress, challenges remain:
“There’s still limited awareness of Alpha-1 among the public and even within the medical community,” Fernanda says. “This leads to delays in diagnosis and unequal access to treatment across countries.”
She also highlights the need for more research:
“We need innovative therapies—and ultimately, a cure. That’s why research is such a critical part of our strategy.”
Fernanda adds that EU research frameworks and upcoming funding opportunities offer real potential:
“We’re building on the momentum from the SoHO Regulation to push for better access and equity.”
“Alpha-1 is gaining visibility in the European health policy agenda. Advances in diagnostics and genetic testing are helping with earlier detection, and cross-border collaboration is stronger than ever.”
A message of unity and hope
As the interview concludes, Fernanda shares a heartfelt message with the Alpha-1 community:
“We are stronger together. By aligning on shared objectives and joining forces, we can make real progress in improving diagnosis, care, and access to treatment.”
Her final words are a call to action: “Let’s keep building solidarity, collaboration, and hope. The future is ours to shape.”
