The Alpha-1 community continues to strengthen its presence at European level with the formal acceptance of new representatives into the ePAG of ERN-LUNG in January 2026. Three new Alpha-1 representatives — Marion Wilkens (Germany), Ron Ewals (Netherlands) and Edwin Brekelmans (Netherlands) — have been formally accepted into the European Patient Advocacy Group (ePAG) of ERN-LUNG.
The appointment reinforces the growing recognition that Alpha-1 must be actively included in high-level discussions on rare lung disease policy, research and clinical standards across Europe.
Alpha-1 amplifies Europe’s dialogue on rare lung diseases
ERN-LUNG connects specialised healthcare providers across Europe to improve diagnosis, treatment and research for rare respiratory diseases. Within this framework, the ePAG — coordinated at European level by EURORDIS — ensures that patient organisations are directly involved in governance, strategic planning and working groups.
For Alpha-1, representation within this structure means being present where standards of care are discussed, where cross-border expertise is coordinated and where research priorities are shaped. It signals visibility, credibility and influence.
As one of the newly appointed representatives, Marion Wilkens has already articulated clear priorities. She stresses that diagnostic delay remains a pressing issue across rare lung diseases:
“Earlier and more accurate diagnosis remains critical. Many rare lung diseases still face average diagnostic delays of several years.”
She also underlines the need to strengthen collaboration between National Reference Centres: “Digital collaboration tools and case discussions across National Reference Centres should be further strengthened to ensure that expertise travels, even when patients cannot.”
For the Alpha-1 community, these priorities resonate strongly. AATD continues to face underdiagnosis and variability in access to specialist expertise across countries.
A community bringing expertise
Alpha-1 patient organisations’ representatives bring established experience to the table. As Marion notes: “The Alpha-1 community brings strong experience in genetic counselling, family screening, and long-term disease management.”
The community’s long-standing focus on patient education and empowerment also positions it as a constructive partner within ERN-LUNG:
“Many individuals with Alpha-1 actively monitor their condition and engage in shared decision-making. This culture of empowerment can be valuable across ERN-LUNG.”
The addition of representatives from Germany and the Netherlands broadens geographical representation and strengthens cross-country exchange within the network. It also reinforces the Alliance’s commitment to ensuring that Alpha-1 perspectives are consistently embedded in broader rare lung strategies.
From representation to impact
Being part of the ePAG is about meaningful participation and structural involvement in European health governance. As Marion puts it: “Patients should not only be asked for feedback at the end of projects but involved from the design phase.”
“Patient representation is fundamental because healthcare systems are ultimately designed to serve people, not diseases.”
With a stronger and more diverse presence within ERN-LUNG ePAG, the Alpha-1 community is clearly consolidating its role in Europe’s rare lung ecosystem — ensuring that AATD is not overlooked, but actively included in shaping the future of respiratory care.
Watch the full interview with Marion Wilkens
About ERN-LUNG
ERN-LUNG is a European network of specialised healthcare providers working together to improve diagnosis, treatment and care for people living with rare respiratory diseases. By connecting National Reference Centres across member states, the network facilitates cross-border case discussions, guideline development and collaborative research.
As a European knowledge hub for rare respiratory diseases, ERN-LUNG plays a strategic role in shaping standards of care and influencing how rare lung conditions are addressed within national health systems.
The role of the ePAG
Within ERN-LUNG, the European Patient Advocacy Group (ePAG) provides the formal mechanism for patient representation. Coordinated at European level by EURORDIS, ePAG advocates participate in governance structures, contribute to working groups and ensure that patient perspectives are integrated into decision-making processes.
For the Alpha-1 community, active participation in the ePAG means being present where priorities are defined, where guidelines are shaped and where research directions are discussed.
