April 25, 2026 marks the ninth annual European Alpha-1 Awareness Day led by the Alpha-1 Europe Alliance, a date in which those afflicted with the genetic condition Alpha-1 Antitrypsin Deficiency (Alpha-1) come together as one community to share their stories, experiences and hardships. The goal of this Awareness Day is to provide information on this genetic condition in order to achieve increased rates of detection and diagnosis and ultimately achieve greater access to treatment for those affected by Alpha-1.
Kicking off the week leading up to Alpha-1 Awareness Day the Europe Alliance held its General Assembly in Warsaw, Poland. The day began with sessions from Alpha-1 specialists across Europe to discuss current trends affecting Alpha-1 patients, including discussions on bronchiectasis and how Alpha-1 affects the liver. The afternoon continued with collaborative discussions on trends, challenges, and actions among individual countries in Europe regarding how they are able to engage in Alpha-1 research. Members shared reflections from the patients they represent across Europe, learning from each other, and discussing future possibilities for increased cross-border collaborations. The day concluded with a dinner, where attendees were able to continue discussions for support for future advocacy in their countries.
Then, it was off to Brussels, where A1F reconvened once again with the Europe Alliance at the European Parliament to meet with MEP Olivier Chastel from Brussels, a champion for Alpha-1 patients, to discuss important factors surrounding the obtainment and processing of plasma for Alpjha-1 treatment.
After an introduction from MEP Chastel, Fernanda Aspilche, Europe Alliance President, led the charge with the current landscape of Alpha-1 in Europe and the call to action to unite the Alpha-1 community around 6 top priorities. We then heard from Dr. Van der Spiegel, from the European Commission and one of the initial creators of the SoHO Regulation, which aims to increase plasma sufficiency for Alpha-1 treatment production. After hearing discussions from several key opinion leaders from companies of plasma processing and treatment production, A1F ended the day with patient perspectives, and highlighting the importance of continued investment into Alpha-1 care.
Today, on #EuropeanAlpha1AwarenessDay, we remind all of the importance of testing and targeted awareness. Particularly, all patients with unexplained liver disease, and those experiencing frequent respiratory infections should seek testing. Additionally, individuals with a family history of alpha-1 antitrypsin deficiency, those living with COPD, bronchiectasis, or irreversible asthma should also undergo screening.
The Alpha-1 Foundation is proud to partner with the Alpha-1 Europe Alliance on global awareness for Alpha-1. European patient organizations are raising awareness through social media campaigns, community events and high-level roundtable discussions with policy- makers. If you would like to learn more or to get involved, please contact Nadine Nuchovich at nnuchovich@alpha1.org.
