{"id":5933,"date":"2022-11-16T17:05:33","date_gmt":"2022-11-16T16:05:33","guid":{"rendered":"https:\/\/alpha1-deutschland.org\/?p=5933"},"modified":"2024-02-16T17:11:16","modified_gmt":"2024-02-16T16:11:16","slug":"europaeische-alpha1","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/europaeische-alpha1","title":{"rendered":"European Alpha-1 patient organizations on the way to an EU Alpha-1 Alliance"},"content":{"rendered":"
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Author<\/h4><\/span><\/span>\n<\/div>\n
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Heinz Stutzenberger, 2nd Chairman of Alpha1 Germany eV, as appeared in Alpha1 Journal 2\/2022<\/a>.<\/strong><\/p>\n<\/div>\n\n\n\n

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Years ago, it was largely a matter of chance whether and where representatives of European Alpha-1 patient associations would meet: sometimes at an event of a large patient organization, sometimes at a continuing education course of a pharmaceutical company, or possibly at a major event of the American Alpha-1 Foundation or its affiliated Alpha-1 Global Organization. Even in these more or less chance encounters, it became clear that all parties benefited from the exchange of information, which usually revolved around national initiatives, new findings regarding Alpha-1 antitrypsin deficiency, and planned national events.<\/p>\n

It was therefore only logical to put this exchange of views on a more structured footing, namely in the form of monthly meetings of the steering committees. These meetings were launched at the beginning of 2021, at the height of the COVID-19 pandemic, which is why they have been held virtually ever since. Over time, more and more national associations joined, and ultimately the following countries were represented: Belgium, Denmark, Germany, France, Greece, Great Britain, Ireland, Italy, Croatia, the Netherlands, Austria, Poland, Portugal, Romania, Sweden, Switzerland, and Spain.<\/p>\n

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It was therefore only a matter of time before the proposal arose to officially organize themselves at the European level.<\/p>\n

At this point, long-time members of our association will likely think, "This has happened before," and they would be correct: Alfa Europe was founded back in 2006. This was followed by approximately six years of intensive association work, after which a period of declining activity ensued, until Alfa Europe faded into obscurity and dissolved. This risk is inherent in any association whose existence depends on the commitment of a small but highly active membership; unfortunately, it can never be completely eliminated and should therefore not deter the idea of a new organization.<\/p>\n

Following the joint decision by the national associations to establish a European alliance around the end of 2021, concrete steps quickly followed:<\/p>\n

In an initial attempt, a group of six representatives from four nations came together to lay the groundwork for systematically preparing the merger. First, contact was established with existing EU patient organizations to learn from their successful models of collaboration and the necessary prerequisites. Discussions were also held with relevant pharmaceutical companies to ensure their support for a European alliance, which, as expected, was confirmed in these talks.<\/p>\n

In parallel, the regional associations were surveyed about the advantages they expected from a merger and the services it should provide. Due to the significant differences, for example in the organizational structure of the regional associations and the number of members, the responses covered a wide range of concerns.<\/p>\n

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  • A good, Europe-wide supply of substitute products and services received the greatest support as a generally endorsed, overarching goal.<\/li>\n
  • In the smaller countries, the desire for easier and more systematic access to information on all aspects of AATM prevailed, as well as support in establishing and expanding their own national associations.<\/li>\n
  • The major organizations expected the merger to increase their political clout at the EU level, as well as improve their visibility and influence with pharmaceutical companies and drug regulatory authorities, and ultimately enable communication on an equal footing with their large US sister organization, the Alpha1 Foundation.<\/li>\n<\/ul>\n

    In a further survey, 77% of the participants then expressed their support for the establishment of a European Alpha1 alliance and indicated their willingness to join this organization.<\/p>\n

    The willingness to participate in the preparatory committees was somewhat lower, at 59%. Besides the language barrier, the main reasons for this reluctance were the high personal burdens caused by work, family, and health problems. This was particularly noticeable in the smaller countries, where the groundwork is concentrated on a small number of active club members.<\/p>\n

    Subsequently, a larger cross-border group convened to define the next steps for establishing an alliance. To this end, necessary tasks and work packages were identified, grouped under overarching criteria, and assigned to four working groups:<\/p>\n

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    • AG1: Strategy and Objectives<\/li>\n
    • AG2: Work structure and processes of the new organization<\/li>\n
    • AG3: Organization, statutes, rules of procedure<\/li>\n
    • AG4: Legal issues, registration, contracts<\/li>\n<\/ul>\n

      Sufficient volunteers have been found for all working groups, so they can begin their work soon. Before this can happen, however, a project manager needs to be appointed. This manager will further develop the preliminary work conceptually as needed, fine-tune, support, and coordinate the work of the working groups, and be responsible for reporting progress to the steering committee and presenting updates regularly. This manager will also need to establish and maintain contacts with legal advisors, without whose expertise the upcoming contractual issues cannot be resolved professionally. The current hope is that lawyers will be found who will handle a large portion of the tasks pro bono (i.e., for the benefit of the community, providing legal advice free of charge); otherwise, professional legal counsel will have to be procured quickly on a fee basis.<\/p>\n

      The work of the groups and the project manager is scheduled to begin in early November. Six to seven months are planned for completing the tasks and preparing the necessary documents, so that \u2013 if all goes well \u2013 the alliance can be founded in early summer 2023. Our short- and medium-term goal is for it to be led by a full-time managing director who will, among other things, ensure that the organization becomes financially self-sustaining as soon as possible after initial funding from the founding members. The alliance will be structured in such a way that it can be continuously expanded as the number of member countries grows. To encourage undecided candidates to join, a few projects will be launched immediately after the alliance's founding, at least one of which should deliver tangible benefits for the alliance members and the patients they represent within a short period.<\/p>\n

      Transparency is a quality that is highly valued both in the preparatory work and later in the association's activities. This is also one of the reasons why we are informing our Alpha1 Germany members early with this article. At the end of September 2022, we also informed our American contacts at the Alpha1 Foundation about the status of our plans and activities, with both sides reaffirming their commitment to constructive collaboration. As usual, brief status reports to the pharmaceutical companies supporting us are planned.<\/p>\n

      What are the advantages of a European alliance for us patients in Germany? We have a rare disease, and the more of us there are, the stronger our voice will be toward advocating for our demands to policymakers, the pharmaceutical industry, and researchers. Knowledge sharing, cross-border research (as seen particularly with COVID-19), and a professional presence in Europe can bring us closer to the goal of the best possible treatment and ultimately help in the search for a cure.<\/p>\n

      In closing, we would like to address our readers on a personal matter: as mentioned above, many legal questions arise, and those currently involved lack the necessary expertise to resolve them. If you, dear readers, know any lawyers (preferably with English language skills) who could support us free of charge, please do not hesitate to contact Ms. Wilkens immediately. She will then quickly connect you with suitable contacts in the working groups. Thank you very much.<\/p>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>","protected":false},"excerpt":{"rendered":"Author Heinz Stutzenberger, 2nd Chairman of Alpha1 Germany e.V., as published in the Alpha1 Journal 2\/2022. 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