The Alpha-1 Community shines at Rare Disease Week 2024
The Alpha-1 Europe Alliance proudly represented our community at Rare Disease Week 2024 (RDW 2024), held from November 18-22 in Brussels. This significant event, organized by EURORDIS-Rare Diseases Europe, served as a vital platform for patient advocates, including Alpha-1 representatives, to engage directly with newly elected Members of the European Parliament (MEPs), European Commission representatives, and members of the European Economic and Social Committee (EESC).
AATD Patient Conference 2024: Empowering the Alpha-1 Community
On November 5th, 2024, the Alpha-1 Antitrypsin Deficiency (AATD) Patient Conference was held online, co-hosted by the European Lung Foundation, EARCO, ERN Lung, and the Alpha-1 Europe Alliance. This event aimed to provide individuals living with AATD, their families, caregivers, and healthcare professionals with valuable insights into managing the condition.
Advocating for safety and quality at the EU SoHO Conference
On June 24th, 2024, the Alpha-1 Europe Alliance played a vital role at the European Commission’s event in Brussels, focusing on the Comprehensive EU Framework for Safety and Quality of Substances of Human Origin (SoHO). This new regulation aims to enhance the safety of both donors and patients, while ensuring sufficient plasma supply within Europe.
Bringing the European community together for the Alpha-1 awareness day
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Alpha-1 Europe Alliance holds its first General Assembly in Barcelona
On November 27th, 2023, the Alpha-1 Europe Alliance celebrated a pivotal moment with its inaugural General Assembly in Barcelona, Spain. This event marked a significant milestone as 23 representatives from 12 European countries gathered to shape the future of the Alliance.