Brussels, 22 April 2026 – Ahead of the European Alpha-1 Awareness Day on 25 April, the Alpha-1 Europe Alliance (A1EA) organised a high-level event at the European Parliament on 22 April 2026. The event brought together patients, policymakers, clinicians, researchers, and industry experts to discuss progress and ongoing challenges in the care and treatment of Alpha-1 Antitrypsin Deficiency (AATD).
AATD is a genetic condition that primarily affects the lungs, liver, and, in some cases, the skin. Although AAT deficiency is thought of as a rare genetic condition, it is actually one of the most common inherited genetic conditions in some parts of the world, such as Europe, according to the European Lung Foundation. Yet it remains widely unknown, underdiagnosed, and frequently missed. Around nine out of ten people living with AATD are unaware of their condition, leaving many without appropriate care or treatment.
Titled “Raising awareness of Alpha-1 Antitrypsin Deficiency: progress and challenges”, the event was hosted by MEP Olivier Chastel (Renew Europe), member of the SANT Committee, and moderated by Flaminia Macchia, A1EA Policy advisor. It highlighted both European and national perspectives on diagnosis, access to therapies, and plasma collection—a critical component of treatment for Alpha-1 patients.
Plasma supply in Europe: challenges and sustainability
One of the key topics addressed by the speakers was the ongoing challenges in plasma donation and collection. Discussions highlighted a range of operational, logistical, and donor-related barriers that can affect collection efficiency and the long-term sustainability of plasma supply across Europe.
Plasma-derived medicinal products (PDMPs) provide life-saving therapies for people with Alpha-1 Antitrypsin Deficiency and other rare genetic conditions, supporting over 300,000 patients across Europe. Despite this vital role, Europe significantly depends on plasma imports for around 40% of its supply. Meeting the growing demand will require more donors and coordinated efforts across countries.
Speakers included representatives from the European Commission, patient advocates, clinicians, and pharmaceutical stakeholders. Discussions covered the implementation of the SoHO Regulation, EU plasma self-sufficiency, the production and supply of plasma-derived therapies, and the role of national Medicines Agencies. More than 13 patients and patient advocates from Austria, Belgium, Ireland, Italy, the Netherlands, Norway, Spain, and Switzerland attended the event in person, bringing a strong international patient perspective. Two of them also shared their personal experiences, highlighting the real-life impact of inequalities in care across Europe.
Advocating for equity in Alpha-1 care
Fernanda Aspilche Ferro, President of the Alpha-1 Europe Alliance, presented the Alliance’s Call to Action, uniting the European Alpha-1 community around six priorities designed to tackle urgent care gaps, reduce inequalities, and advance a fairer future for all people affected by Alpha-1.
“The European Alpha-1 community is united in advocating for timely diagnosis, equitable access to therapies, cross-border healthcare options, and improved patient outcomes. This event demonstrates our commitment to working with policymakers, clinicians, and industry partners to ensure that no Alpha-1 patient in Europe is left behind.”
Event highlights
- Contextual overview of AATD care and augmentation therapy
- Clinician perspectives on the benefits of augmentation therapy
- Patient experiences and expectations for the future
- Panel discussion on improving awareness, care, and access across Europe
About the Call to Action
The Alpha-1 Europe Alliance’s Call to Action unites the community around six priorities, setting a roadmap to strengthen diagnosis, care pathways, and equitable access to therapies across Europe.
About the Alpha-1 Europe Alliance
The Alpha-1 Europe Alliance (A1EA) is the collective voice of national Alpha-1 patient organisations across Europe, representing 13 member organisations in 14 countries and over 4,500 individuals living with Alpha-1 Antitrypsin Deficiency. The Alliance calls for access to timely diagnosis, individualised care, holistic therapies, and equitable treatment options while promoting awareness, research, and empowerment of national patient groups.
