Advocating for equity in Alpha-1 care: A European path to 2030
Despite advances in medicine and European cross-border collaboration, thousands of people living with Alpha-1 Antitrypsin Deficiency (AATD) still face delayed diagnosis, limited treatment options, fragmented care pathways, and significant inequities in access to treatment among different member states. The disparities across European health systems remain profound.
Timely and targeted interventions can transform lives — yet too often, Alpha-1 patients remain invisible in health policy discussions.
The Alpha-1 Europe Alliance is committed to changing this reality. Through a dedicated action plan, we are working to ensure equitable access to diagnosis, care, and treatment for all Alpha-1 patients across Europe. Our efforts include the promotion of clinical guidelines, awareness campaigns, research initiatives, and collaboration with healthcare stakeholders to reduce inequalities and strengthen care pathways.
This vision takes shape in our Strategy 2030, a five-year strategic framework to drive unity, accountability, and action across the Alpha-1 community.
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A shared starting point: Building consensus across Europe
In November 2024, the Alpha-1 Europe Alliance convened leaders of Alpha-1 patient associations from 13 European countries, alongside representatives from France, the USA, caregivers, clinicians, researchers, industry, and policymakers in Brussels.
This landmark in-person event — “Achieving Equity in Access to Treatment for the Alpha-1 Community in Europe: Building a Roadmap to 2030” — served as a catalyst for collaboration. Together, participants identified the most pressing challenges in care and treatment and began to shape a shared vision for a more equitable future.
The meeting laid the foundation for a pan-European strategy to reduce disparities, align advocacy efforts, and strengthen connections across the Alpha-1 community.
The insights and commitments that emerged formed the basis of a joint Call to Action, setting the direction for our advocacy strategy to 2030.
The Call to Action: Uniting European voices for change
As a result of the discussions held during the Brussels event, the Alpha-1 Europe Alliance outlined the main work priorities in a Call to Action. This Call to Action unites the Alpha-1 community around six shared priorities, addressing the most urgent care gaps, reducing inequalities, and calling for coordinated action at the European level.
Call to Action:
- Recognise the needs of people with Alpha-1 Antitrypsin Deficiency (AATD).
- Enable early, accurate and targeted diagnosis of AATD across Europe.
- Ensure equitable access to treatments and therapies.
- Build a sustainable and ethical plasma supply in Europe.
- Invest in long term funding for public research in AATD.
- Embed patients in decision-making across policy, research, and health systems.
These priorities form the backbone of our Strategy 2030, guiding our advocacy and collaboration efforts over the next five years.
The Strategy 2030 marks a pan-European effort to unite the Alpha-1 community around a shared vision of health equity. It represents a turning point in our collective journey, moving from awareness to accountability and action.
With collaboration, commitment, and the right policy support, we can accelerate the systemic changes needed to ensure that no Alpha-1 patient is left behind.
Join us!
Together, we can drive meaningful change, reduce inequalities, and build a future where every Alpha-1 patient in Europe has access to timely diagnosis, high-quality care, and the treatments they need.
Thanks to our funders
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