Hans Frankl, SHG, Styria, Austria, as published in Alpha1 Journal 2/2023.

I, Johann Frankl, leader of the self-help group in Styria, Austria, was delighted to accept the invitation from our partner organization Alpha 1 Germany to the annual group leader meeting in Darmstadt. The aims were to exchange our experiences and develop perspectives for future projects in our respective self-help groups.

Even the preparation for the flight required consultation with my pulmonologist, as I, being an infrequent flyer, was unfamiliar with the process. Today, I can confidently say that even for lung patients (without oxygen requirements), flying should not be a problem after consultation with their respective doctor and, if necessary, with the airlines.
Until then, I only knew Marion Wilkens, the chairwoman of the German patient organization. I went to the meeting with a touch of apprehension. Even before the introductions, I received a warm welcome from like-minded individuals. Thank you for that. I was also able to actively contribute to the discussions on cross-border topics and participate in the subsequent, very interesting discussions. The points developed were divided into four groups for better organization and later presentation. The results of each group were discussed again in plenary session on day two and then presented to the entire board of Alpha1 Germany.

In summary, I can take away from the event that the topics and working methods are reflected in the self-help groups. Within the team and the board, the positive atmosphere and dynamic were clearly palpable, above all the shared desire to make a difference. Our goal is for patients with respiratory and liver problems to be tested for Alpha-1. As like-minded individuals, we want to be points of contact, guides, and companions for those diagnosed with Alpha-1 on their journey.

I would like to take this opportunity to thank you once again for the invitation and the good cooperation with the group leaders and the board of Alpha1 Germany, true to the motto: Never stop starting – never start stopping.

Stay healthy and take care. Looking forward to seeing you again, best regards.

Hans Frankl, SHG Styria, Austria, as published in Alpha1 Journal 2/2024.

In my role as group leader of Alpha1 Austria, I have repeatedly had the opportunity to participate in the German group leader meeting in Hanover.

Across countries, there is no difference in how rare diseases like AATM are handled. The self-help group "Alpha 1" primarily focuses on informing and supporting affected patients and their families in their daily lives. We also see it as our mission to raise awareness of this genetic defect among doctors. This is crucial for securing access to the necessary, costly, and life-sustaining medication.

Nevertheless, we continue to receive feedback from our members that while Alpha-1 Antitrypsin deficiency is known, necessary examinations based on possible symptoms are not yet being carried out in a standardized manner.

This excerpt of topics, and several more, were discussed and addressed in working groups at the meeting in Hanover on Friday.

On Saturday, the patient day organized by Marion Wilkens of Alpha1 Germany and Prof. Dr. Sabina Janciauskiene, scientific director of the event, took place at Hannover Medical School (MHH). Exciting new information from the world of Alpha1 was presented.

I was deeply impressed by Marion Wilkens' insightful article "Living with the Illness," in which she described her daily routine as someone affected by the illness. Thank you so much for that.

The other speakers covered a range of topics:

• Bronchiectasis in AATM (Dr. Isabell Pink)
• Infections and vaccination at AATM (Dr. Christopher Alexander Hinze)
• Lung transplantation at AATM (Dr. Mark Greer)
• Substitution „Yes or No“ with case studies (Prof. Dr. Sabina Janciauskiene)
• AATM from the hepatologist's perspective – new treatment options (Dr. Katja Deterding)
• Following the presentations, there was a very productive question and answer session with the speakers.

The social aspect during the break and afterwards allowed me to talk to like-minded people and exchange ideas constructively.

I would like to take this opportunity to thank the group leaders and the board of Alpha1 Germany once again for the invitation and the excellent cooperation, true to the motto: Never start to stop – never start to stop. Stay healthy and take care of yourselves.

Looking forward to seeing you again. Kind regards, Hans Frankl

Marion Wilkens, Alpha1 Germany eV, as published in Alpha1 Journal 2/2024.

The Alpha1 Germany management team meeting took place from August 23rd to 25th, 2024 at the MERCURE Hotel Hannover Medical Park. A weekend full of intensive discussions, new projects, and groundbreaking decisions has come to an end.

Patient interests in focus

After introductions, which included a brief report from each self-help group, we once again welcomed Johann Frankl, delegate from the Alpha-1 organization in Austria (his impressions are described on page 17). It was already clear on Friday that topics such as oxygen supply are central to patients and deserve more attention. We urgently need more information on our website and would also like a video on this topic for our YouTube channel. In line with this, we are offering a seminar with Dr. Sommerwerck at our 2025 information day.

Questions about skin problems related to Alpha-1 are frequent, but few can answer them because there is little data available (except for panniculitis). The idea from the Franconian self-help group (SHG Franken) of distributing flyers to doctors' offices is to be expanded through cooperation with sales representatives from CSL and Grifols. This offers great potential for introducing the groups and the work of the association.

The challenges of the rehabilitation project were discussed at length. Many patients require support with applications, particularly in combination with substitution therapy during rehabilitation. We will provide all patients with further information on this after the online group leader meeting at the beginning of December, where we will discuss a summary of the most important points regarding rehabilitation with our advisory board member, Nicole Scherhag.

A new project desired for 2025 is an introduction to the system of care levels and their practical significance.

This project aims to provide a comprehensive overview of the care level system as used by long-term care insurance in Germany. The goal is to offer a detailed insight into the principles, procedures, and benefits associated with these care levels. We will examine both the theoretical aspects and the practical application in the daily lives of people requiring care.

As a result, we hope to provide easily understandable, well-founded information that serves as a guide for those affected and for professionals. This will enable those in need of care and their relatives to receive optimal support and to use long-term care insurance benefits in a targeted manner.

Marion Wilkens, Chairwoman of Alpha1 Germany eV, as appeared in Alpha1 Journal 1/2024.

Our last in-person meeting was in October 2023. It was a very intensive gathering full of good ideas and many jointly conceived projects (See report in Journal 2/2023).

Our first online meeting in March 2024 focused on picking up where we left off and following up on the projects. Applications need to be submitted to secure funding for such projects.

However, it is not always easy to make this possible alongside living with the illness, everyday life in general, and sometimes also alongside professional life.

As a result, we were unable to meet the first deadline for submitting funding applications and must concentrate on having projects such as a substitution flyer and assistance with rehabilitation applications ready at the next in-person meeting.

However, regardless of additional project work, the core tasks of self-help groups are the following: And if you are missing a group in your region, please contact us, we will be happy to support you in founding a new group.

You'll see, it's more fun than work, as you can tell from the smiling faces in our Zoom call.

We're eager to see what ideas emerge at our next meeting in Hanover. This time, the focus will be more on knowledge transfer and how I can connect with doctors in the region, and how a network can be helpful in this regard. We'll be happy to report on this in the next issue of the journal.

Roland Bühner, as appeared in Alpha1 Journal 2/2023.

The group leader conference held from October 13th to 15th, 2023 in Darmstadt was themed „A dynamic process“

It was a successful working meeting held in a very nice conference hotel with ideal meeting rooms and the presence of almost all group leaders and their deputies. Partners were also welcome, as they bring a different perspective to the discussion. The well-structured agenda, with its sensible timing, included sufficient breaks for respite. The internal workshop was complemented by an excellent presentation on "Insurance for Volunteers" by Dr. Stiehr, which was also perfectly timed (after a very intensive work session on Friday evening and Saturday morning).

The three-day format (Friday afternoon/evening, all day Saturday, and Sunday morning) worked very well, as it allowed us to start working on Friday evening, thus ensuring optimal use of the available time. The revised format (compared to previous management meetings) was a complete success. The novelty: the board and the management team worked separately on Friday evening and Saturday morning. One group held a board meeting, while the other brainstormed and developed projects. Within a short time, four working groups were formed, each focusing on a different topic. These groups were selected from a pool of nine ideas that had been jointly developed and distributed beforehand.

• Alpha-1 antitrypsin deficiency and public perception/presentation/acceptance
• Alpha-1 antitrypsin deficiency and substitution/augmentation therapy
• Alpha-1 antitrypsin deficiency and rehabilitation
• Alpha-1 antitrypsin deficiency and severe disability

An incredibly constructive and highly focused working environment developed within the individual groups (mostly four people). On Saturday, the results and ideas of the four groups were presented to the entire team, consisting of the board and group leaders. This approach, or rather this format, proved very effective and should be continued in the future. The shared dinners on Friday and Saturday, as well as the relaxed get-togethers, also fostered team spirit and a sense of community.

Important NOTE: The board members and the group leaders or deputy group leaders all do their "jobs" on a voluntary basis and have limited time (some are still fully engaged in their professional lives and other volunteer activities). Therefore, such a weekend can initially only spark ideas and get things started. It's a dynamic process that began this weekend, and we now need to fill it with action and action.

Thomas Heimann, Alpha1 Deutschland eV, as published in Alpha1 Journal 2/2022.

The leaders and their deputies of our self-help groups meet several times a year to exchange information and discuss current topics. This year, our strategy workshop was the focus of two sessions – one online in March and the other in person in July – where we jointly analyzed and evaluated the situation after two winters of the pandemic and developed our future prospects. We reported on this in the last newsletter.

During our online meeting in September, we retrospectively looked at what goals from the workshop had already been implemented, tackled, or where there were still bigger hurdles than previously suspected.

We will regularly include these small retrospectives in the future to check whether we are all still on the right track, or whether we can make adjustments and improvements.

In doing so, we will continually remind ourselves what self-help groups are actually for and what they are for.

Following the motto: "Modernize (and digitize) self-help without losing heart and closeness."„

The second major topic at this meeting was the future financial support of the self-help groups by the association.

Due to the positive experiences gained during the COVID-19 pandemic with online meetings on the one hand, and the regional reorganization of self-help groups on the other, it is no longer essential for a club member to be assigned to only one regional group. Rather, it is highly desirable that as many members as possible participate in online meetings, regardless of their region. The same applies to in-person events, for example, in metropolitan areas where several self-help groups are located nearby. Providing as much information as possible to as many people as possible is more important than rigid group assignments.

For us at the club, this meant that the rigid allocation of funds based on group size (a "watering can" approach) is no longer appropriate. We are now shifting our support more towards project-based funding. Those who accomplish a great deal and provide assistance for self-help initiatives must also receive more funding.

Alpha1 Germany e. V. 

From July 1st to 3rd, 2022, we held our first GL workshop since the outbreak of the COVID pandemic with our group leaders, deputies, and advisory board members. The meeting point was our familiar Hotel Freizeit In in Göttingen.

On Friday afternoon, we first dealt with internal GL matters.
New group leaders, new groups, exchange of experiences about the 'few' activities during the lockdowns, and generally how everyone is doing after this lean time.

During our dinner together, our two moderators Francois and Marie prepared the room for the Saturday workshop.

The workshop on Saturday was themed „Working Alone Together“ and was the second part of the online workshop that we started in March 2022 on our monitors.

The main focus was, of course, on developing ways to successfully continue, restart, or relaunch group work after the coronavirus pandemic.

Marie has once again captured our results in a great picture.

After so much intensive mental work, Saturday was best spent relaxing outside on the hotel terrace. And because so many topics need time to sink in, we plan to do a retrospective in the fall, again online, to see what we've been able to implement so far.