Author
Heinz Stutzenberger, 2nd Chairman of Alpha1 Germany e. V., as appeared in Alpha1 Journal 2/2023
As reported in the last article on this topic, the Alpha-1 Europe Alliance, the umbrella organization of European Alpha-1 clubs, has formally existed since its registration in the Belgian register of associations on October 17, 2023. With this date, the preparation for our merger, which extended over about a year and involved intensive work, was completed, and thus began the obviously no less intensive period of club work.
A key component of any association's work is holding the general assembly, in the case of our Alliance. It took place on November 27, 2023, in Barcelona at the premises of the company Grifols, which had kindly invited two representatives from each of the national member associations. These representatives came from both the six founding members (Belgium, Germany, Italy, Switzerland, Spain, and the United Kingdom) and the five organizations that had applied for membership (Denmark, Austria, Portugal, Romania, and a foundation active in Spain and South America, LoveXair). Ireland had expressed its interest in membership in writing but still needed time to prepare its application documents and was therefore also represented as a candidate for membership.
The general assembly was embedded in a two-day visit and training program on the topic of "plasma" and followed the meeting in Dublin in spring 2023 (see our Report in Alpha1 Journal 1-2023) the second opportunity for the country representatives to meet in person, since the preparatory working group meetings always had to take place virtually online on the computer.
But let's start from the beginning: During the afternoon of Sunday, November 26, 2023, the participants from all countries gradually arrived at the hotel, and there were already some great greetings in the hotel lobby as the participants met individually or in groups and greeted each other joyfully.
In the evening, at the invitation of Grifols and with the participation of the staff responsible for patient care, a first joint meal took place. There was lively exchange of news regarding the association's activities, as well as personal matters.
The next morning, the intensive training program at Grifols began, which, after welcoming the participants, consisted of the following blocks extending over one and a half days:
- Introduction to the basics of blood and blood plasma
- Visit to the Grifols Museum with its company history, the development of plasmapheresis, and the tools, equipment, and facilities for processing and manufacturing plasma-based therapeutic products.
- the commitment and activities of Grifols, especially in the area of Alpha-1 Antitrypsin Deficiency
- Market access for pharmaceuticals in Europe with background information on how and why, for example, access to alpha-1 antitrypsin for augmentation therapy is regulated completely differently in EU countries.
- Background information on the EU regulation regarding the „Sustances of Human Origin (SoHO)“, for which there is also a separate article in this journal.
- Overview of testing and analysis methods for human blood and its components, with a detailed explanation of the AlphaID test kit, which allows anyone in the USA to have their blood tested for the 14 most common mutations of alpha-1 antitrypsin deficiency without involving a doctor.
- A tour of a plant for the production of blood plasma-based products, from the arrival of the deep-frozen containers with plasma through a multitude of processing steps to the filling and delivery of the therapeutics to the end consumers.
Despite the packed schedule, there were regular breaks for networking among the participants and with the Grifols specialists on site. The program for the first day of the visit was interrupted in the early afternoon to allow for the first general assembly of the Alpha-1 Europe Alliance to take place in a conference room at Grifols, but of course without the participation of Grifols employees.
President Fernanda Aspilche, originally from Spain but now living in Belgium and a member of the Belgian association, began by welcoming those present with an emotional review of the journey they had taken together to reach this undoubtedly historic moment for the association: the first general meeting. She confirmed that the meeting had a quorum and gave a brief report on the status of the alliance, which up to that point still consisted of the six founding members mentioned above.
Following this, board member Frank Willersinn, a German native who now also lives in Belgium and heads the local association, announced the results of the application audit and concluded with the board's recommendation to admit the aforementioned associations and the foundation as new members. This recommendation was unanimously accepted by the association members, instantly increasing the number of voting full members from six to ten. The foundation in question was admitted as an associate member without voting rights, as its board members are appointed by the foundation council, whereas the alliance's bylaws stipulate that, for full membership, the boards of member associations must be democratically elected.
The next item on the agenda was the approval of the membership fees. I had prepared a proposal with fees tiered according to the clubs' revenue, a reduced fee of €80 for associate members, and a fee of €20 for individuals (who, according to the bylaws, can become members without voting rights if they live in a country without a national Alpha1 club). The proposal was unanimously adopted.
Following this, our external coordinator, Veronica Lopez Gousset, reintroduced the board, which is elected for a three-year term. She outlined the plans for future meetings of the association's bodies and explained the planning of proposed projects, the implementation of which naturally depends on the availability of appropriate funding. Subsequently, the treasurer, Elena Goyanes from Spain, presented the budget plan for the first fiscal year, which runs until December 31, 2024. A representative from Portugal was then recruited from among the participants to serve as auditor.
Board member Cristina Barbiero from Italy then presented the status and planning of internal and external communication, and as the last official item on the agenda, Marion Wilkens, our 1st Chairwoman, described the structure of the advisory board to be established in the future and called on the members to submit proposals for its composition, on the basis of which the candidates to be contacted will then be selected.
After a brief closing statement and thanks to everyone for their work beforehand and their contributions during the meeting, the Vice President closed the session.
As the accounts reveal, the two days in Barcelona were packed with professional development and association work, but the social aspect of such a gathering was not neglected. This was largely thanks to the patient support staff from Grifols, who incorporated ample breaks into the program and arranged the dinners to provide sufficient opportunity for both professional and personal exchange. The presence of senior Grifols staff also provided an opportunity to clarify general questions or questions related to the presentations. The completely unplanned performance of a magician at the end of the final dinner will also be remembered for a long time: a participant from Italy, who works full-time as a doctor treating Alpha-1 patients in a large hospital, turned out to be a professional card magician whose nearly half-hour performance of sophisticated magic tricks utterly astonished the participants.
During the program on both days of the visit, the relationships between the members of the national associations were significantly strengthened. This also applies to the relationship with the patient support workers from Grifols, who clearly see their work as a matter of the heart, carried out with passion and empathy. The event concluded with heartfelt mutual thanks from all participants, coupled with the hope that the established and strengthened connections could be nurtured for the mutual benefit of all involved, far beyond the event itself.
