Heinz Stutzenberger, as appeared in Alpha1 Journal 2/2024.

As readers of Alpha-1 Journal 1/2024 may recall, the Alpha-1 Europe Alliance got off to a dynamic start in its first year after its founding on October 17, 2023. This allowed for the successful launch of the major campaign for Alpha-1 Awareness Day on April 25. This momentum was largely thanks to our then-external coordinator, Veronica Lopez Gousset. To our great regret, however, she left us mid-year to pursue a doctoral degree at the Harvard THChan School of Public Health in Boston. Perhaps the Alpha-1 Europe Alliance board, by issuing a well-deserved and outstanding letter of recommendation, played a small part in enabling this significant career move.

The departure dealt a severe blow to the dynamics of the association, as the entirely volunteer board members, some of whom also work full-time jobs, had to search for a successor. Fortunately, one was soon found: Jill Bonjean has been the new coordinator of the Alpha-1 Europe Alliance since September 15, 2024. Originally from the USA, she now lives in Paris and has many years of experience with organizations working in the field of rare diseases. After securing funding for the Alliance, at least for the foreseeable future, by mid-year, the position of Communication Manager was also filled. Lila Martinez Ucha, who has Argentinian roots, now lives in Spain, and also has many years of experience in her field, was appointed to this role.

Of course, the association's activities did not come to a complete standstill even during the period without support. For example, two other organizations successfully completed the application process and were accepted as members:

• the Alpha-1 Foundation Ireland, whose representative had already been active in the founding preparations of the Alliance; however, due to a change in personnel, the application was delayed by several months.
• the Longfonds Foundation from the Netherlands, which is open to all patients with lung diseases and from whose ranks the Alphas sought admission to the Alliance.

Bernd Dobbert, as appeared in Alpha1 Journal 1-2024.

When I was asked a few months ago by the Alpha-1 Europe Alliance whether I would be interested in giving a lecture at a conference on the topic of „new regulation of substances of human origin“, such as blood plasma, I spontaneously agreed.

The board of Alpha-1 Europe Alliance then registered me for the so-called SoHO conference on June 24th in Brussels, hosted by the European Health Union, an organization led by the EU Commission to ensure the safe supply of medical products to EU citizens.

Of course, I had prepared myself for a bit of work, but in the first few days after registering, my email inbox was overflowing with messages like: Please confirm your participation. Please register. Please confirm that you are participating as a speaker. Please log in to the EU online tool. You must submit all travel documents online for reimbursement, and so on and so forth.

Regardless of this, there were deadlines: Please submit a professional CV by such-and-such a date, please send a current, professional photo, enclosed a template of the slides which you must fill with content and send to us by xxx at the latest.

In addition, I received preliminary programs, professional travel information, and emails on various topics in a very friendly tone.

Suddenly I had a lot of work, far more than I had ever imagined. I threw myself into the tasks, sent out photos, a resume, and finally the finished presentation slides. Special thanks go to our board member Heinz Stutzenberger, who provided me with invaluable support throughout the entire preparation period and supplied me with a wealth of important information.

The big day drew ever closer, and finally, on Sunday, June 23, 2024, I boarded the ICE train from Cologne to Brussels. In just under two hours, I arrived, took the next metro to Schumann station, and quickly found my hotel near the conference venue.

The next morning, I went to the conference venue, where I found myself in a long registration line. Half an hour later, I had a day pass and a speaker's badge. There was still some time before the conference began, so I looked around. I overheard English, Spanish, German, and many other languages being spoken at the coffee tables. There were many reunions, joyful hugs, and conversations about recent vacations. People knew each other. This wasn't the case for me; I didn't know anyone. So I was glad when one of the organizers briefly greeted me and introduced me to the moderator, with whom I had already been in contact via email.

We were soon able to take our seats in the conference room. Around 200 participants were spread out in the windowless, unadorned space. Due to the high level of interest, there was an online access option for watching the conference live.

Tamsin Rose, the conference director, ensured everything ran smoothly from the very beginning. The schedule had to be strictly adhered to; otherwise, with so many speakers, we probably would have had to sit there for several days.

The EU Commissioner for Health, the Spanish Minister of Health, the Deputy Director for Health and Food Safety – one after the other, they all spoke. The entire conference was held in English, so participants had to concentrate very hard on the topics and the language.

Words, words, words, many different organizations, interest groups, coordinators, profit and non-profit organizations, lobbyists from many European countries – soon my head was spinning with all the acronyms, but it was also exciting, interesting, and educational. A small glimpse into our Europe, how it works, what the processes are like, and how legislation is implemented. I was allowed to get a taste of a world about which I had previously only been able to form an opinion from the press and newspaper articles.

The morning flew by, and before I knew it, it was lunchtime. Drinks, delicious salads, and light snacks were served. I chatted with a woman who was also there as a patient. It was fascinating to hear from an MS patient from Norway that she had received stem cell therapy five years earlier at a hospital in Moscow. Her story deeply impressed me.

Suddenly, two women rushed up to me, shook my hand, and introduced themselves. Fernanda Aspilche and Veronica Lopez from the Alpha-1 Europe Alliance had been looking for me and found me. An interesting conversation quickly developed. I learned many more details. They also introduced me to a few other participants. Tamsin Rose approached me and praised us for the perfect presentation. They had used our slides as a template and sent them to all the speakers so they could structure their slides similarly. Despite its importance to our organization, I was enjoying the day more and more.

After the lunch break, my presentation drew closer. Finally, the moment arrived, and Tamsin Rose called me to the podium. To be honest, I was quite nervous and initially held the microphone much too far from my mouth. But after that first slight wobble, the ice was broken. I told my story about my alpha-1 antitrypsin deficiency, which, as I noticed, many in the audience followed with great interest. In the second, shorter part of my presentation, I addressed the implications of the new law regarding the blood plasma donations that are so important to us.

The discussion focused on two aspects: The first concerned the safety of donors and recipients. The law provides excellent protection for donors in this regard. This also ensures the safety of us recipients. A Europe-wide law to protect all donors is important and will be implemented in the future. I commented on this positively. The second point concerned a secure supply of blood plasma for all patients in Europe. I pointed out that there are still not enough donors. Therefore, in consultation with the Alpha-1 Europe Alliance, I suggested that a modest compensation might lead to a larger number of donors.

After my presentation ended, there was a final coffee break. Many participants approached me, congratulated me on my talk, and further interesting conversations ensued. I made several new contacts and collected many business cards. Finally, I was approached again, and the first criticism arose. The main point of contention was that compensation for donors was unnecessary, as there was already enough blood plasma available. Following this conversation, I informed Fernanda Aspilche, the chairwoman of the Alliance. Veronica Lopez responded immediately, and the social media channels received a written statement outlining the Alliance's position and our stance as an independent patient organization. Soon, the final session began, concluding with a cocktail reception in the late afternoon. After these last engaging conversations, I left the conference venue and hurried to catch the last Eurostar train back to Cologne.

In summary, I can only say that it was a wonderful experience and a little adventure for me, and completely different from what I had imagined. If the opportunity arises again, I would definitely be very happy to participate.

Dr.-Ing. Heinz Stutzenberger, as published in Alpha1 Journal 1/2024.

Following the successful completion of the first General Assembly of the Alpha-1 Europe Alliance (see our report in the Alpha-1 Journal 2/2023), the board and member representatives have commenced their work. Especially in the initial phase of the young organization's existence, the coordination effort is considerable, which is why the board meets twice a month to make necessary decisions and monitor the progress of the resulting activities. A members' meeting is held once a month; all these events take place online. Strategic decisions were made and important activities were initiated during the first meetings.

• The projects to be carried out in the current calendar year have been defined, including an awareness campaign (more on this below), an Alliance launch event in Brussels for the autumn, and various training events throughout the year.
• From the multitude of possible memberships in European umbrella organizations, a systematic evaluation was used to determine which ones the Alliance would adopt and who would represent the Alliance in each case.
• Initial considerations regarding the appointment of advisory boards have been made.
• The website has been significantly expanded compared to the basic version from the founding phase; see [link/reference] www.alpha1europe.org

Since many of the aforementioned activities are not feasible without financial resources, a working group was formed to take care of raising funds, and it did so with considerable success: in addition to the companies CSL Behring and Grifols, which have long supported Alpha-1 associations, the pharmaceutical companies Mereo and Takeda were secured as sponsors, thus securing a significant portion of the activities for the first fiscal year.

My personal activities have also focused primarily on European policy, where the aim is to assess the impact of the recently adopted regulation on substances of human origin (SoHO) and – where possible – to influence it in the interests of recipients of blood plasma-based products. Another key focus is the inclusion of alpha-1 antitrypsin on the list of critical medicines at the European Medicines Agency (EMA).

The Alliance has already implemented its first major project: a campaign for European Alpha-1 Awareness Day, which takes place annually on April 25th and aims to raise public awareness of Alpha-1 antitrypsin deficiency and its various manifestations. A significant number of posts with engaging graphics and informative short texts were published on the Alliance's channels. These were translated into twelve different languages. A total of 19 European Alpha-1 associations or support groups took up the initiative, and our sister organization, the American Alpha-1 Foundation, also shared our posts.

Overall, the Alpha-1-Europe Alliance has established itself quickly and solidly in its first few months; many companies and organizations are seeking contact, so the few active volunteers are already facing serious scheduling difficulties. We will continue to report regularly on the Alliance's further activities.

Heinz Stutzenberger, 2nd Chairman of Alpha1 Germany e. V., as appeared in Alpha1 Journal 2/2023

• 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.

Heinz Stutzenberger, 2nd Chairman of Alpha1 Germany eV, as appeared in Alpha1 Journal 2/2023.

The last two issues of the Alpha1 Journal described the steps towards establishing a European umbrella organization for Alpha1 associations from various countries up to spring 2023. Things progressed rapidly after that, at least until the summer break, when the pace of progress slowed slightly: firstly, because all the country representatives gradually went on holiday, and secondly, because our project coordinator went on maternity leave.

Nevertheless, further progress was made even during this somewhat quieter phase.

We already presented the logo, defined by Working Group 1, in the last issue. Its colorful design symbolizes the diversity and inclusivity of the participating organizations. Based on this, the layouts for the website, the standard slide set, and the office materials (letterhead and business cards) were then finalized.

A preliminary entry page for the website is already complete. It contains basic information about the new organization and will be continuously expanded in the future. Since the website is aimed at national associations, it will initially only be available in English. Individuals should continue to contact their national associations directly, and where none exist, an English-language page offers at least a way to obtain initial information and make contact.

The modified entry page, planned for a later date, will then be designed with strong shades of blue and other colored graphic elements.

Working Group 2 has meanwhile prepared an initial draft budget. Not entirely unexpectedly, the need for establishing and maintaining regular operations for the association, including engaging a service provider to handle routine business, has already proven quite substantial. Securing these funds is the next major task for those involved. Fortunately, the planning process has shown that our former project manager will be available to us again for at least a few months, until she returns to the university in the summer; naturally, this is contingent upon the availability of the necessary funding.

Following this, the communication concept for the initial phase was developed. From the abundance of information channels now available, those must be selected that will make the maximum contribution to achieving the club's goals with the least possible time investment. This process is not yet complete, but for the time being, after intensive discussion and with professional (free!) advice, the following channels were selected. X (formerly Twitter) and LinkedIn These have been designated as additional channels. Anyone subscribed to these channels should definitely check out their performances.

Working Group 3 submitted its draft statutes to a lawyer who is supporting us pro bono, meaning free of charge. Some large law firms agree to this and, within the scope of these mandates, advise not only individuals who cannot afford legal representation, but also, and preferably, charitable organizations like ours. The changes resulting from this consultation were manageable in scope, in contrast to the necessary and sensible additions that ballooned the statutes to over 20 A4 pages. They are written in English; however, for registration in Brussels, they still had to be translated into French.

Afterwards, Working Group 3 had to develop a procedure for establishing the association. The lawyer strongly advised against naming all participating associations as founding members, because the risk of disagreements that could complicate or delay registration increases significantly with the number of participants. We ultimately agreed that the six countries that had significantly contributed to the work in the working groups should also be the founding countries, and these are:

• Belgium
• Germany
• Italy
• Switzerland
• Spain
• United Kingdom

These companies first audited each other to ensure they met the admission requirements stipulated in the statutes; all audits were completed with positive results.

After that, the board positions had to be filled, starting with the chairperson. Besides the talents generally required for such a position, our preferred criteria were: personal experience of being affected (for reasons of credibility), female (like the vast majority of volunteers in our patient organizations), and young (and therefore able to perform the duties over a longer period). And indeed, we found a suitable candidate. The remaining five board positions were filled with active members from the preparatory phase, taking into account the skills they demonstrated during that time. The board now looks like this:

Heinz Stutzenberger, 2nd Chairman of Alpha1 Germany eV, as appeared in Alpha1 Journal 1/2023.

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.

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.

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.

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).

AG1: Strategy and Objectives

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.

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:

• 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.
• 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.

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.

AG2: Work structure and processes

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.

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.

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.

AG3: Organization, statutes/bylaws, rules of procedure, legal issues, registration, contracts

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.

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).

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.

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.

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!

Heinz Stutzenberger, 2nd Chairman of Alpha1 Germany eV, as appeared in Alpha1 Journal 2/2022.

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.

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.

It was therefore only a matter of time before the proposal arose to officially organize themselves at the European level.

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.

Following the joint decision by the national associations to establish a European alliance around the end of 2021, concrete steps quickly followed:

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.

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.

• A good, Europe-wide supply of substitute products and services received the greatest support as a generally endorsed, overarching goal.
• 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.
• 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.

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.

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.

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:

• AG1: Strategy and Objectives
• AG2: Work structure and processes of the new organization
• AG3: Organization, statutes, rules of procedure
• AG4: Legal issues, registration, contracts

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.

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 – if all goes well – 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.

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.

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.

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.