On April 4–5, the Alpha-1 Europe Alliance (A1EA) proudly participated in the 7th Global Research Conference and 10th Patient Congress, hosted by the Alpha-1 Foundation (A1F) in Lisbon, Portugal.
This landmark event brought together more than 25 countries and a diverse global community of experts, researchers, healthcare professionals, industry representatives, patient advocates, and caregivers, united in the mission to accelerate progress in Alpha-1 Antitrypsin Deficiency care.
Alpha-1 Europe
A1EA was featured in the following key sessions:
- Panel 1: Alpha-1 Europe Alliance – Working Collectively on Behalf of Patients
Fernanda Aspilche and Cristina Barbiero presented the Alliance’s strategic work across Europe, highlighting key achievements, current challenges, and upcoming initiatives aimed at improving access to care and building patient-led advocacy networks.
- Panel 2: Living with Alpha-1 – Patients’ Perspective
A deeply moving session where patients and caregivers, including Anabela Lemos, Cristina Barbiero, Carlos Cambon, Elena Goyanes, Frank Willersin, Shane Fitch, and Steven Knowles shared personal experiences of living with Alpha-1. These lived testimonies offered powerful insights into the day-to-day realities and long-term needs of Alpha-1 communities globally.
- Additionally, Knut Skaar, Vice-Chair of Alfa-1 Norden, joined The Augmentation Therapy Journey panel, sharing experiences and perspectives from the Nordic countries.
The dual-format Congress, focusing on both research (with in-depth sessions on liver and lung-related treatments) and patient empowerment, provided a unique space for cross-sector dialogue and international collaboration. It also reinforced the importance of patient voices in shaping policy, research, and clinical practice.
The Alpha-1 Europe Alliance is honored to have contributed to this vital conversation and remains committed to working collectively to advance equitable care and meaningful change for all Alphas across Europe.
A heartfelt thank you to all participants for their energy and engagement, and a special shoutout to the Alpha-1 Foundation team for hosting such a successful and inspiring event.
We look forward to continuing this shared journey toward a common goal: understanding —and ultimately curing— Alpha-1 Antitrypsin Deficiency.
