Two years of Alpha-1 Europe Alliance

First, it is worth mentioning that the A1EA has strengthened its personnel and organizational structure: Since October 2025, Flaminia Macchia has been advising us on representing our interests on the EU political stage. She has been active in Brussels for years for various rare disease organizations and has already had the opportunity to successfully represent the Alliance, together with our Chair Fernanda Aspilche, at an event in the European Parliament.

A key theme in the second half of 2025 was further education, with, among other things, the following focus areas:

• In the field of alpha-1 antitrypsin deficiency (AATD), drugs are increasingly being developed that affect DNA or RNA in one way or another; therefore, the A1EA organized a two-part webinar in which our French contact person, Marion Bouchekareilh, provided information on the background of the techniques used; this webinar was so informative that we have dedicated an entire article to it in this journal.
• EFA, the European Federation of Allergy and Airways Diseases Patient's Associations, the umbrella organization for patient organizations for allergies and respiratory diseases, held a four-day patient academy on the topic of "Political Advocacy" in Prague. The Alliance was able to send five participants from various member associations, who reported enthusiastically about the training at the end. We hope to find German participants for future training courses who want to boost the effectiveness of their commitment in their associations through such further training.
• During the monthly members' meetings, two member organizations reported on their experiences with recruiting volunteers for their association work, with the greatest difficulty consistently being found in attracting young activists; therefore, I would like to combine this observation with an appeal to our readers: Anyone who can reliably dedicate time to working in our European association and also possesses a talent that is helpful in association work is encouraged to get in touch!

At various events concerning the Critical Medicines Act, we have presented our interests and viewpoints. The Act aims to prevent shortages in the supply of medicines and focuses on chemically manufactured drugs whose production has largely shifted to China and India for cost reasons. The specific characteristics of plasma-derived medicines are not adequately considered in the current proposals, which is something we naturally want to improve.

The biggest impact on the political stage was certainly our participation in the meeting with the Belgian Member of the European Parliament Olivier Chastel, which took place as part of the European Month of Awareness for Alpha-1 and was funded by our colleagues from the Alpha-1 Foundation in the USA.

Flaminia Macchia presented the core political demands of the Alpha-1 Europe Alliance, which are formulated as six calls to action. In short, these are:

• Recognition of the needs of individuals with AATM
• Enabling earlier, more accurate and more targeted diagnosis of AATM across Europe
• equal access for all to treatments and therapies
• Establishing a sustainable and ethical plasma self-sufficiency system in Europe
• Long-term securing of funding for research in the field of AATM
• Ensuring the possibility for patients to influence political decisions

The description of her personal fate by our president Fernanda Aspilche left a lasting impression of the plight of patients who cannot receive the only effective therapy for severe AATD, namely substitution therapy, in their country of residence: she is a native Spaniard and would receive substitution therapy in her home country; now she lives in Belgium, where it is only available for patients diagnosed before 2010!

You have two options to form your own opinion about our activities:

• The event at the European Parliament was recorded.
  For recording
• For the second anniversary of our Alliance, mentioned above, we have also recorded a greeting from our president.
  Watch the video