Strengthening the European Alpha-1 patient community
At Alpha-1 Europe Alliance, we are dedicated to improving the lives of individuals living with Alpha-1 Antitrypsin Deficiency in Europe. Our work focuses on three key priorities: advocating for research and access at the European level, raising awareness and fostering education across all stakeholders, and building capacity within the European Alpha-1 patient community. By addressing these priorities, we strive to create a more supportive environment for individuals affected by Alpha-1 in Europe.
Our Priorities
With the goal of building a more supportive environment for people living with Alpha-1 in Europe, we focus our work on:
- advocating for research and access at the European level
- raising awareness and fostering education across all stakeholders
- building capacity across the European Alpha-1 patient community
Our Work
Research and Advocacy
We partner with relevant stakeholders to foster research and drive action on policy issues of importance to the European Alpha-1 community. We partner with EARCO and other research organisations to ensure patients and experts are appropriately involved in early engagement in R&D and in the design and participation of clinical trials. We seek to contribute to EMA and ERNs proceedings in a formal manner as an organisation (some of our board members are already considered patient experts within these establishments). Lastly, we also interact with policymakers, including European Parliament members to discuss access to treatment in Europe, in partnership with relevant stakeholders from the Alpha-1 community.
Awareness and Education
Through social media campaigns and awareness campaigns, we aim to familiarise the European population with the challenges of living with Alpha-1 antitrypsin deficiency. Upcoming projects include an Alpha-1 virtual information day and a media campaign for Alpha-1 Awareness Day in Europe.
Capacity Building
We support our members in building their network, reach, and capacity by connecting them to timely news and relevant experts, and through targeted programs and training available only to member organisations.
Empowering the European Alpha-1 community: advocacy, awareness, and capacity building for a supportive future.
Our Projects
Planning of projects already started, publication foreseen after first General Assembly.