{"id":5930,"date":"2023-06-22T16:59:49","date_gmt":"2023-06-22T14:59:49","guid":{"rendered":"https:\/\/alpha1-deutschland.org\/?p=5930"},"modified":"2024-02-16T17:04:43","modified_gmt":"2024-02-16T16:04:43","slug":"europaeische-alpha-1-patientenorganisationen-auf-dem-weg-zur-alpha-1-europe-alliance","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/europaeische-alpha-1-patientenorganisationen-auf-dem-weg-zur-alpha-1-europe-alliance","title":{"rendered":"European Alpha-1 patient organizations on the way to the Alpha-1 Europe 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 1\/2023<\/a>.<\/strong><\/p>\n<\/div>\n\n\n\n

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Upon reading the headline, some readers might think we just had a similar article recently, and they would be correct. However, the headline of the article in issue 2\/2022 still used the term "EU Alpha 1 Alliance," and you can read more below about why the current article has a slightly different title.<\/p>\n

In the aforementioned article, I reported that four working groups with different tasks had been set up to prepare for the establishment of a European umbrella organization of national Alpha-1 patient representatives, and that a project manager was to be sought to coordinate the activities of the working groups.<\/p>\n

There was a formal job description for the project manager position, which we distributed within the committees where Alpha-1 patient organizations are represented. The candidate we selected from the applications we received proved to be an exceptional find: since mid-January 2023, Veronica Lopez Gousset has been coordinating our activities from her home in Paris. She holds a bachelor's degree in Health Technology Assessment, which translates somewhat awkwardly as "the systematic evaluation of scientific information on claims regarding the benefits, risks, costs, and impacts of procedures and technologies related to the healthcare of the population." She is supported by Gabriella Farland, who is working for us while simultaneously preparing for her bachelor's degree at Columbia University in New York. Thanks to the availability of videoconferencing systems, the cross-continental distribution of the participants, who are also spread across Europe, poses no problems whatsoever. The fact that meetings can only take place in the afternoon European time, because otherwise our American colleague hasn't gotten up yet, is not a problem at all: many representatives of the European associations are still working and are only available in the late afternoon anyway.<\/p>\n

By the end of January, our project coordinator had been trained, and the working group meetings could begin on a bi-weekly basis, with additional meetings as needed. I will report on the progress achieved there below (I am particularly well-suited to do so, as I am the only representative who participates in all three working groups).<\/p>\n

AG1: Strategy and Objectives<\/span><\/h2>\n

The first task of this working group was to determine a name for the newly founded umbrella organization, agreeing on the name "Alpha-1 Europe Alliance," which also explains why this article bears this name in its title. The chosen name reads well in many European languages, its meaning is immediately clear even without foreign language skills, it is not historically burdened, and the term "Alliance" indicates that the participants are joining forces in their common interest without relinquishing their national sovereignty. The abbreviation "EU" was deliberately omitted to make it clear that members from all over Europe are welcome, not just those from the European Union. The countries currently seeking membership are highlighted in dark on the map; it is evident that there is still potential for growth in our alliance, particularly in Eastern Europe.<\/p>\n

Next, the "Mission & Vision" were developed, which encompasses the alliance's purpose and the desired end result. These two aspects are important for various reasons: firstly, the requirement to formulate them clarifies the purpose of the activities for the participants themselves; secondly, it makes it easier to communicate this to others. Finally, these definitions are also needed for the first articles of the statutes, which registration authorities will later use to verify that the umbrella organization is pursuing its statutory objectives. The wording of both descriptions, translated from English, reads as follows:<\/p>\n

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  • Our mission (our task): to represent all people living with Alpha-1 at the European level and to advocate for access to timely diagnosis, the best possible individual care and holistic therapies by raising knowledge and awareness, promoting research and strengthening national Alpha-1 patient organizations.<\/li>\n
  • Our vision (our goal): all people living with Alpha-1 in Europe experience a better and longer life through a holistic approach to Alpha-1 with access to the best possible current and future treatment and ultimately a cure.<\/li>\n<\/ul>\n

    Currently, Working Group 1 is working on defining the logo and website for the alliance. The agency Ultrabold from Mannheim, which also handles similar tasks for our association, has been commissioned for this work. They were selected through a small tender process and awarded the contract, not because of the price of their bid, but because of their impressive professional work. While the agency develops the creative concepts and refines them in consultation with the working group, the working group members are focusing on creating the website content.<\/p>\n

    AG2: Work structure and processes<\/span><\/h2>\n

    This working group will address two main topics: firstly, defining projects for the alliance. The first project is to hold a meeting of all national representatives shortly after the alliance's founding. Representatives from politics and relevant patient umbrella organizations will also be invited to introduce and promote the new alliance. The second project involves registering our alliance with the European Medicines Agency (EMA), which must approve all medicines available in Europe before they can be prescribed. As national associations without an umbrella organization, we cannot access the EMA.<\/p>\n

    Working Group 2 is currently addressing its second major topic: the budget for the first and subsequent years of the alliance. The costs for the aforementioned kick-off event will certainly constitute a significant portion of this budget. Once the total financial requirements have been determined, the next step will be to identify potential sources to cover them.<\/p>\n

    In anticipation of our business activities, a spreadsheet-based cash book was already set up in AG2, which in the first financial years met the requirements of the Belgian tax authorities for the accounting of an organization of our size.<\/p>\n

    AG3: Organization, statutes\/bylaws, rules of procedure, legal issues, registration, contracts<\/span><\/h2>\n

    As expected, in this working group the tasks requiring the most effort are combined with those that are also the most strenuous, especially since the original two working groups were merged into one to avoid overlapping topics.<\/p>\n

    The first task of Working Group 3 was to determine the organization's headquarters. Brussels, as the epicenter of all European activities and the home of many organizations relevant to us, was the obvious choice. However, we thoroughly examined beforehand whether this might present any insurmountable obstacles (which, fortunately, it did not).<\/p>\n

    After examining possible legal structures, we decided to establish ourselves as an ASBL, that is, a Belgian non-profit association (ASBL = association sans but lucratif = non-profit association). The advantages of this legal form include the comparatively low registration effort and, in particular, the fact that the association can be registered immediately after signing the articles of association and thus acquire legal capacity.<\/p>\n

    The next step involved drafting the bylaws. We didn't start from scratch, but rather used the bylaws of a very similar umbrella organization as a blueprint, adapting them to our specific needs. We are currently drafting a transitional provision, necessary because not all national representatives can be present for the founding meeting, but all interested countries should be admitted quickly and smoothly after the founding process is complete. The nearly finished draft bylaws, now more than 10 pages long, has been approved by the national associations via a circulation procedure and is awaiting submission to a law firm. This firm will review our draft on a pro bono basis, meaning a free consultation, which some large law firms fortunately undertake themselves when the client is a charitable organization like ours. The working group members are now eagerly awaiting the lawyers' feedback, as the extent of the necessary amendments will determine how quickly the founding can actually take place.<\/p>\n

    These accounts hopefully demonstrate that the members of the working groups, with great dedication and enormous time investment, have already come a long way toward a merger at the European level, and the goal is now within reach. The response to the presentation of our activities and the progress achieved in various committees, among our sponsors in the pharmaceutical industry, and also at the Alpha1 Foundation's International Patient Day in Dublin (see separate report in this issue and the picture below) was overwhelmingly positive, and I am very optimistic that we will have been able to finalize the establishment of the Alpha-1 Europe Alliance by the time the next issue of our journal is published. You will be the first to know!<\/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 1\/2023. 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