Fernanda Aspilche, President, and Heinz Stutzenberger, Vice-President of the Alpha-1 Europe Alliance, attended the International Plasma Protein Congress (IPPC 2025), held in Warsaw, Poland, from 20–21 May. This leading annual meeting of the plasma sector brought together 300 participants, including industry leaders, policymakers, healthcare professionals, patient advocates from around the world — and even a plasma donor.

EURORDIS-Rare Diseases Europe and the European Patients’ Forum (EPF) are calling in this joint position statement on EU Member States to protect meaningful patient involvement in the European Medicines Agency (EMA), warning that ongoing negotiations on the revision of EU pharmaceutical legislation risk undermining decades of progress in patient-centred regulation.

Alpha-1 Antitrypsin Deficiency (AATD) is a silent, underrecognised genetic condition that progressively damages the liver, lungs and/or skin. Despite its serious impact, it remains widely undiagnosed across Europe.