From a small group of affected individuals to the largest Alpha-1 patient organization in Europe – 25 years of Alpha1 Germany

Flippingbook

03 Preface
06 Service: Board of Directors & Advisory Board
10 25 Years of Alpha1 Germany e. V. – Strong together for people with Alpha-1

FEATURED:

12 The Decade of the Lungs: For Lung Health in Germany
14. Introduction of our two new scientific advisory boards

ON OUR OWN BEHALF

15 Upcoming Dates
16 Alpha-1 History Videos: When Medical History Comes Alive
20 From the German board to Europe: Thank you, Heinz Stutzenberger
21 Journal, now only DIGITAL
22 New guide: The path to a severely disabled person's ID card – explained in an easy-to-understand way
23 Running together for Alpha-1 – A look back at the Rare Diseases Run 2026

DOCUMENTED FOR YOU:

25 Giving and receiving help: A special information day
27. Lecture by Dr. Marc Lepiorz: The Knowledge Quiz: General Information and More about Alpha-1
31 Lecture by Markus Baltensperger: Singing as Therapy
33 Prof. Dr. Pavel Strnad: Perspectives: Alpha1 and the liver
36 Current News Items – from new therapies to click rates and AI to chatbots
38 children and adolescents with Alpha-1 Antitrypsin Deficiency (AATD)
43 Personal experiences: The mere thought takes her breath away
44 Lungs and psyche: The psyche breathes along with
49 Air to live
52 What the Abyss Teaches Us About Life

HELP FOR RELATIVES:

54 Support for relatives of people with alpha-1 antitrypsin deficiency

ALPHA1 ON THE ROAD:

56 Alpha1 Germany at the DGP Congress in Munich
58 New COPD guideline: Important step for the early detection of alpha-1 antitrypsin deficiency
59th DGIM Congress 2026 in Wiesbaden – Internal Medicine in Transition
60th World Bronchiectasis Conference 2026 in Hanover – ten years of international exchange for better care
61 My Day in Front of the Camera
63 COPD research in transition: Individualized diagnosis and treatment

FROM ALPHAS FOR ALPHAS:

64 Alpha1 Germany e. V. in conversation: Who are you beyond the diagnosis, Sabine?
67 Learn self-management – INSEA gives courage for everyday life

MISCELLANEOUS:

68 Courageously speaking about bullying – Sandra Böhmer in the Alpha-Cast

FROM THE Self-Help Groups:

69 The 4th Patient Day at the Thorax Clinic Heidelberg
71st AlphaCare Regional Day in cooperation with Alpha1 Germany and the SHG Region Trier
72nd Patient Day in Regensburg – Knowledge, exchange and a special setting
74 IRMA in Hamburg
75 Further information from the self-help groups

ALPHA1 INTERNATIONAL:

76 Alpha1 Germany traveling in Europe
79 highlights from the work of the Alpha-1 Europe Alliance in the first half of 2026
81 Memory Exercise

FROM RESEARCH:

82 Continuing education (for doctors) up to date – Knowledge about Alpha-1 now also available as a podcast
83 Your experience is needed!

LETTERS TO THE EDITOR:

84

Oxygen support during physical exertion is used when the body's oxygen demand increases during activity, leading to an oxygen deficiency, for example, during a walk, at the gym, or during other everyday activities. It's important to note that with this form of hypoxemia, there is usually no significant impairment of oxygen supply at rest. The goal is to improve oxygen saturation during exertion, potentially alleviate shortness of breath, and increase physical performance, which in turn can have a positive impact on mobility and quality of life.

If an oxygen deficiency is detected, the necessary oxygen flow rate for adequate oxygenation must be individually determined. The goal is to achieve a partial pressure of oxygen (PaO2) of at least approximately 60 mmHg. Millimeters of mercury (mmHg) are the unit of measurement for the partial pressure of oxygen in the blood.

Oxygen supply is assessed either by measuring blood gases, for example at the earlobe, or using a pulse oximeter on the finger. An oxygen saturation of approximately 90–92 mg/dL is often sufficient; however, target values can vary from person to person and are determined in consultation with the treating physician.

It should be noted that the required flow rate at rest during the day may differ from that during physical exertion or at night. Oxygen supply must therefore be adjusted to individual needs; personal activity levels and living conditions also play an important role.

Changes in physical condition may necessitate adjustments to both oxygen requirements and the device. For example, if oxygen was temporarily prescribed in an acute situation, such as due to an infection or hospitalization, it is possible that no additional oxygen supply will be needed after recovery.

Firstly, there is stationary oxygen supply, which distinguishes between liquid oxygen and stationary oxygen concentrators.

Liquid oxygen

• Advantages: Quiet; independent of mains power; also suitable for higher oxygen flow rates.
• Special features: The supply is provided via a stationary tank, which is regularly filled by the supplier.

Oxygen concentrators

• Advantages: No oxygen supply required;
  Mostly easy to handle.
• Special features: Noise level; power consumption; regular maintenance required; the maximum possible oxygen output depends on the device.

Secondly, there is the supply of mobile devices.

Oxygen flow rates are often measured in stages rather than liters per minute, meaning that, for example, stage 2 does not automatically translate to 2 liters. Therefore, it is crucial to know which device setting corresponds to the prescribed oxygen flow rate. Furthermore, these stages can vary between manufacturers. It is essential that the oxygen supply is individually tailored to the specific device and that the oxygen delivery is regularly monitored.

There are different mobile supply options:

• Mobile liquid oxygen units that are filled at the stationary tank
• Mobile oxygen concentrators, for example for pulling or carrying

It should be determined whether continuous oxygen therapy is necessary or whether breath-controlled oxygen delivery (demand system) is sufficient. This technique can conserve oxygen and extend the operating time of mobile devices.

The evidence for oxygen therapy varies considerably across different questions, making individualized consultation and adjustment of care particularly important. In practice, it is evident that those affected are not always adequately informed about their care or trained in the use of the device. As a result, some patients feel ill-prepared for everyday life and perceive portable oxygen devices, in particular, as a burden rather than a support.

There are various treatment options available. Crucially, good communication between patients and healthcare providers is essential to best align the device requirements with individual life circumstances.

In a direct comparative study of continuous-flow and demand-side oxygen systems under stress in COPD patients with hypoxemia, a continuous-flow liquid oxygen device, a liquid oxygen device with a demand-side system, and a concentrator with a demand-side system were examined at the Schön Clinic Berchtesgadener Land. Differences between the devices were expected. On average, however, comparable results were observed with regard to oxygen saturation and walking performance. In contrast, significant differences between the devices were found in individual participants. This underscores the importance of individually testing oxygen systems to achieve the most suitable oxygen supply.

What are the future prospects?

Research is already underway on automated oxygen systems. These systems continuously measure oxygen demand and adjust oxygen delivery to achieve the most stable oxygen supply possible or a defined target oxygen saturation range.

A study conducted by the Schön Clinic compared this procedure with constant, guideline-compliant oxygen administration. The results showed a significant increase in walking distance with automatic oxygen administration. At the same time, participants had to abandon the exercise test less frequently due to shortness of breath. In the subsequent survey, the majority expressed a preference for automatic oxygen administration.

Although automatic oxygen systems are currently used predominantly in clinical and scientific settings, individually tailored oxygen supply remains crucial.

In summary: Whether, when, and in what form oxygen therapy is appropriate must be assessed individually and coordinated with the treating physician. The goal is to provide care that is precisely tailored to where it is needed, thus maintaining or improving mobility and quality of life as much as possible.

And after all this information about oxygen, equipment and supplies, perhaps one thing should not be missing at the end: a chance to take a deep breath.

The Pneumo-Factory has developed several short videos on this topic. They focus on our breathing in everyday life – how natural breathing works, how we can become more aware of it, and how we can experience and use it, for example, in singing together.

I hardly remember anything from the approximately 1.5 weeks I spent in the intensive care and intermediate care units. But what I do know is that I wasn't in pain, there was plenty of ice to soothe my throat, and Schalke won. Initially, I had some breathing difficulties and therefore received NIV ventilation for a short time to relieve the strain on my new lung.

I had to learn how to make my own pills, about 20 different kinds. Then, usually in the morning, the "vampire" would come and take my blood – there were quite a few tubes, and if I was unlucky, I also had to have a bronchoscopy, which wasn't and still isn't for me.

As soon as I was allowed to get up and had passed my first walking test with a walker and physical therapist, I always went to meet my wife and walked outside a lot. During rehab, they explained a lot more and we did exercises to rebuild muscle. I recommend giving your lung (or any other transplanted organ) a name, because the organ now belongs to you like a new family member, and so I named my lung Erwin. The tablets should be taken regularly, ideally at the same time each day, to ensure the levels remain consistent. At the beginning, you have to go to the doctor every week for blood tests. This interval increases, as do the follow-up visits to the transplant center.

Without the donor organ, I might not be alive today. Therefore, my deepest respect goes to the donor and their family who made this possible. The decision in such a situation is certainly not easy, unless you've arranged everything beforehand and filled out an organ donor card. I hope many people carry a card that can help save someone else's life. A little bit of luck is also involved.

We celebrated my very personal anniversary on April 21, 2026 with 30 good friends and family over a lovely meal and great conversations.

It is estimated that up to 10 percent of COPD patients may carry the genetic defect, which has not yet been detected in them. In some cases, a COPD diagnosis therefore masks a rare but treatable disease. For these individuals, a simple blood test brings clarity – and often relief at finally receiving an explanation for the course of the disease. The new guideline recommendation is therefore far more than a formal adjustment. It signals the need for greater awareness, closer examination, and personalized medicine. Because only what is identified can be treated effectively. For those affected and their families, this means hope: hope for an earlier diagnosis and for tailored therapies. Sometimes, better care begins with a single, consistently performed test.

• During a discussion round Bernd Dobbert from Alpha1 Germany (who has been receiving augmentation therapy for years) and Knut Skaar from Alfa-1 Norden (from Norway, where augmentation therapy is not available) were able to convincingly explain from a patient perspective what the differences in access to this therapy mean for them personally.
• Prof. Gerry McElvaney, the leading physician on the subject of AATM A highly respected expert in this field in Ireland and internationally, he impressively demonstrated, based on data from everyday healthcare practice, that a comparison of countries with and without augmentation therapy can result in a life expectancy of affected Alphas that is 6.9 years longer.
• Prof. Stephanie Everaerts, who works at the University Hospital in Leuven Caring for patients with Alpha-1 Antitrypsin Deficiency (AATD) made clear the despair that grips doctors by the knowledge that life-extending therapies exist in neighboring countries which they have to withhold from their own patients.

The event was rounded off with presentations on the specific characteristics of plasma-derived medications and the availability of plasma as a starting material, of which Europe currently still has to import approximately 401 TP3T, primarily from the USA. Presentations were given by Marilena Vrana from PPTA (the association of manufacturers of plasma-derived medications), Alexander Kandt from Takeda, and Claudia Garcia Novellon from Grifols. The speakers emphasized the necessity for Europe to become independent of plasma imports, also to ensure the long-term availability of plasma-derived products, as required by the SoHO (substances of human origin) directive.

While the aforementioned event took place in the political heart of Europe, the Alliance was also active at the central European health institution, the European Medicines Agency (EMA). Its primary task is the approval of new medicines for all European countries. Crucial to this process is the establishment of the general framework for clinical trials, as well as the detailed specifications for conducting the trials for individual medicines. Given the large number of novel medicines under development for the AATM (Advanced Medicines Approval), it is therefore not surprising that the Alliance is striving for the greatest possible influence on behalf of patient organizations. For this reason, it has applied for registration as an "eligible organization" with the EMA. A prerequisite for this is the applicant's complete transparency regarding its sources of income, demonstrated through registration in the European Transparency Register.

This important milestone was reached in mid-March 2026. Following the submission and publication of additional management documents, only the publication of the 2025 financial data remains to complete the application process at the time of publication (Editor's note: Congratulations, as the Alliance has now been accepted as a qualified organization by the EMA).

Even before being recognized as a "qualified organization," there was already a positive collaboration between the EMA and A1EA: In April 2026, the Alliance was asked to nominate a patient who could contribute their perspective as an affected individual to the development of a new drug for AATD as part of a scientific consultation. Since this person must not have had any prior contact with other pharmaceutical companies, board members of the Alliance or national associations were not eligible. Through inquiries with the national associations, a German patient was eventually found who was suitable for this task and agreed to dedicate the necessary time. As the rest of the process is subject to strict confidentiality rules, further details cannot be disclosed.

There were also several noteworthy events within the A1EA organization. In April 2026, a scientific advisory board was appointed to advise the alliance on medical and research-related matters. The composition of the advisory board is shown in Figure 2; Germany is prominently represented on this board with three specialists well-known to us (Prof. Sabina Janciauskiene, Prof. Pavel Strnad, and Dr. David Katzer). Figure 3 is a photograph from the virtual launch event for this board.

Finally, it should be mentioned that the A1EA board members decided to step down six months earlier than stipulated in the bylaws in order to synchronize future board elections with the annual general meetings. The election took place on April 18, 2026, in Warsaw, and all board members were unanimously re-elected, with a minor change in the position of secretary. The current composition of the board is shown in Figure 4.

ERN-LUNG – Patient perspective in the European reference network

At the beginning of this year, I was appointed as a patient representative for the European Reference Network for Rare Lung Diseases (ERN-LUNG). ERN-LUNG explicitly defines itself as a patient-centered network. It connects specialized medical institutions and patient organizations across Europe with the aim of sharing knowledge, improving diagnosis and care, and bringing expertise to where it is needed – rather than sending patients on long journeys. Alpha-1 antitrypsin deficiency is one of the rare lung diseases represented within the network.

For me, this task primarily means contributing the experiences and expertise of the Alpha-1 community to the European dialogue. Topics such as genetic counseling, family screening, lifelong care, and the interplay between lung and liver disease are important for people with Alpha-1.

In March, I was able to participate in the 10th ERN-LUNG board meeting in Paris together with Dr. Frank Willersinn, board member of the Alpha-1 Europe Alliance. There, we had the opportunity to present the story behind the founding of the Alpha-1 Europe Alliance and to explain how a common European voice can emerge from individual national patient organizations.

Another important point was the meeting of the Alpha-1 Antitrypsin Core Network within ERN-LUNG. Here we were able to develop initial ideas on how the collaboration between ERN-LUNG, EARCO, and patient organizations can be further strengthened. I see this as a great opportunity: when medical expertise, research, and patient experience come together, projects can emerge that truly make a difference for those affected.

A discussion about European cooperation and the importance of the patient perspective can also be found in an interview we conducted as part of this work:

ELF – a new European voice for people with Alpha-1

The European Lung Foundation (ELF) has also introduced an important new development this year: the Alpha-1 Patient Advisory Group (Alpha-1 PAG) has been established. Patient Advisory Groups bring together people with a specific lung disease so that their experiences and perspectives can inform the work of the ELF and the ERS. The new Alpha-1 PAG aims to raise awareness of Alpha-1 antitrypsin deficiency and contribute to improving diagnosis, treatment, and care in Europe. Close collaboration with EARCO and European patient organizations is particularly important in this endeavor.

This is an important step: Patient participation doesn't just mean sitting in the audience at an event or being asked for their opinion at the end of a project. Patient advocacy groups should be involved in setting priorities and in research projects, and can also initiate their own patient-led projects.

For Alpha-1, this means that the experiences of people with the disease can be incorporated even more effectively into European research and healthcare decisions in the future. The first meetings of the new group have already begun; further members are expressly welcome.

Anyone who lives with Alpha-1, is a relative of a patient, or is interested in European patient work and would like to participate, is welcome to contact Alpha1 Germany.

ERS – „United for better breathing“

The role of patient advocacy is also changing at the European Respiratory Society (ERS). This year's congress motto is "United for better breathing: partnership between patients, researchers and clinicians" – working together for better breathing, in partnership between patients, researchers and physicians.

We brought the motto to life even before the congress. In an ELF working group, patient representatives from various lung diseases contributed and worked together to better integrate the perspective of those affected into ERS activities. Alpha1 Germany also participated.

For me, this is an important step towards collaboration on equal terms. Doctors and researchers are the experts on the disease. We patients are the experts on living with the disease. Bringing these two perspectives together creates the foundation for truly patient-centered research and care.

I am therefore very pleased to be able to contribute to this process – and sometimes this also includes reminding medical experts that behind every data set is a person with their own unique life story.

One result of this collaboration was an ERSVision live webinar, in which Alpha1 Germany participated. The recording can be viewed online:

EARCO – Research that is becoming increasingly concrete

We have reported on EARCO – European Alpha-1 Research Collaboration – several times in the Alpha-1 Journal over the past few years. And here, too, the importance of European collaboration becomes particularly evident in 2026.

EARCO is a Europe-wide research network whose centerpiece is the international Alpha-1 Registry. Its aim is to better understand the disease, investigate its natural progression, enable earlier diagnosis, and ensure improved care in the long term. To this end, the registry collects standardized clinical data from people with Alpha-1 and facilitates research projects that individual countries or centers could hardly conduct on their own.

What's particularly exciting now is the enormous number of research requests generated based on the registry data. New projects are proposed almost weekly, investigating a wide range of aspects of the disease – from disease progression and risk factors to liver and lung diseases, quality of life, biomarkers, and new treatment options. Numerous such research projects are now documented on the EARCO website.

Even more important is the focus on longitudinal data. The strength of a registry lies not only in collecting data from many patients once. Only repeated data collection over years reveals how the disease actually develops. With several years of follow-up now available, this generates data that can help us better understand disease progression and identify risk factors for different outcomes.

This impressively demonstrates that, through collaborative research, the many individual patient data points can generate knowledge that can ultimately benefit all people with Alpha-1.

A premiere: The first ERS Alpha-1 conference

A very special event is coming up in October: From October 23rd to 24th, 2026, Barcelona will host its first ever ERS Alpha-1 Antitrypsin Conference – both on-site and online.

The conference is jointly organized with EARCO and supported by ERN-LUNG. It brings together physicians, scientists, laboratory experts, and patient representatives to discuss current research findings and develop next steps for research and care. The agenda includes new therapeutic approaches, the role of rare variants, alpha-1-associated liver disease, new insights from EARCO, and questions regarding diagnosis and long-term care.

And Alpha1 Germany is also involved here: I am delighted to be part of the organizing committee for this first ERS-Alpha-1 conference, together with international experts. For us as a patient organization, this is an important sign that patient participation is increasingly understood not as an add-on, but as an integral part of a modern research landscape.

But what good is the best research if the people it affects don't find out about it?

Therefore, following the ERS Alpha-1 conference on November 4th, there will be a dedicated Alpha-1 patient webinar. Researchers, medical professionals, and patient representatives will jointly provide information on the latest developments, contextualize the results of the ERS conference, and report on EARCO's current activities. A live Q&A session will also offer the opportunity to ask questions directly to the experts.

This webinar is aimed at people with Alpha-1, their families and caregivers, patient organizations, and anyone interested in research and patient involvement. The best part: the event is free and is being developed with the support of EARCO, the Alpha-1 Europe Alliance, national Alpha-1 patient organizations like ours, and the ELF.

Looking at these various activities, it becomes clear that our European work is not about attending as many committees, meetings, or international events as possible. It's about something far more important: about having influence and ensuring that the perspective of those affected is represented where decisions are made, research is planned, and new care concepts are developed.

Europe offers us the opportunity to combine Germany's experiences with those of other countries. We can learn from others, share our experiences, and jointly initiate projects that would be difficult to achieve nationally alone.

In short, practical episodes, renowned experts address current topics in diagnostics, therapy, and research. Our scientific advisors, Prof. Dr. Rembert Koczulla and Prof. Dr. Timm Greulich, kick things off with a review of the most important scientific developments of 2025 and 2026. In a relaxed, conversational atmosphere, they contextualize new studies and discuss their significance for the care of people with alpha-1 antitrypsin deficiency.

Although the podcast series is primarily aimed at medical professionals, it is also worthwhile listening for interested patients and their relatives. The clear language and dialogue-oriented structure make complex medical content easily accessible and offer an excellent opportunity to deepen one's knowledge about the disease.

Furthermore, those interested can find numerous additional training opportunities on the Alpha-1 Center website – including recordings of expert lectures and online seminars, as well as current information on scientific events. In this way, the Alpha-1 Centers help ensure that both professionals and those affected remain up-to-date on the latest research and care.

Streamed Up also offers information on alpha-1 antitrypsin deficiency, however, access is only possible with proof of qualification. All physicians are strongly encouraged to attend the continuing education course "Rare Diseases in Pulmonology 2026" from July 2, 2026 (now available on demand).

To the podcast episode