It's not just Annkatrin Siegl who's conquering the summit – together we're forging new paths.

Peter Hübner, as appeared in Alpha1 Journal 2/2025.

Dear members, interested parties and readers, 

We expect to close 2025 with a smaller deficit than in previous years, thus counteracting the negative trend of earlier years. However, this is far from sufficient to guarantee financial security for the coming years. A balanced budget must be the minimum target for 2026. As previously announced, we are developing a series of measures to achieve this goal of a positive annual result in 2026.

This also includes a moderate co-payment for participation in the information day.

Do you have any ideas on how we can tap into additional sources of funding? Actively support us in this endeavor, whether through your own projects, such as requesting donations for a special occasion, or through entirely different suggestions and projects. Feel free to contact us anytime; we look forward to your ideas.

All in all, we can look towards 2026 with hope and excitement.

Of course, the upcoming turn of the year is also a good reason to look back. This includes not only highlights such as the general meeting and the information day, but also the daily work of the association, which is supported by donations large and small. Therefore, a heartfelt THANK YOU to everyone who has supported us!

Unfortunately, where there is light, there is also shadow: outstanding contributions and unreported account changes not only burden us financially, but also cause significant administrative work. Therefore, I urge you to inform us of any changes. To further simplify matters, we will be switching entirely to direct debit and discontinuing the self-payment option.

So, enough looking back and looking ahead, and an opportunity to wish you all a peaceful Christmas and the best possible health for 2026!

Katrin Heimann, as appeared in Alpha1 Journal 2/2025.

My name is Katrin Heimann, I am PiZZ, I have been receiving opioid substitution therapy for 13 years and I use an oxygen concentrator during physical exertion.
At the beginning of 2025, I received the news that I would be allowed to participate in a rehabilitation program in October at the rehabilitation clinic in the seaside resort of Ahlbeck on Usedom.

I'd like to tell you about this stay. I won't go into the application process, deadlines, etc., because my pension isn't covered by the German statutory pension insurance, but by a professional pension scheme. This means the organization and the support I can expect are very individualized.

The clinic wanted me to be admitted in the morning, which, given my 450 km journey, meant that I checked into a campsite the evening before.

I was greeted very kindly at reception the next morning, seated in the dining room, then picked up by a colleague from the ward, and quickly had my room, an appointment with the doctor, and my first lunch.

The clinic may not be furnished in the very latest style, but it feels welcoming and well-organized from the moment you arrive. The light-filled dining room, the attractively furnished rooms with ample and well-designed storage space, and the sound of the Baltic Sea, which is wonderfully audible in the room, made my start very easy. My therapy was determined by the doctor on the first day, and so it began the following morning.

Medical training therapy, breathing exercises on the beach, coordination training, ergometer training, theraband exercises and water aerobics in the hotel's own very nice swimming pool were combined in a good mix with mud packs, massage therapies and inhalations over the following days and really relaxed me.

Furthermore, I received intensive training on COPD. At first, I thought: YES, I already know all that… But the training was really well done, and I didn't feel like I was wasting my time.

Marion Wilkens, as appeared in Alpha1 Journal 2/2025.

Bernd Dobbert, as appeared in Alpha1 Journal 2/2025.

On the initiative of the chief physician of the internal medicine department of St. Marien-Hospital Cologne, Dr. Andreas Schlesinger, a presentation of the outpatient rehabilitation center AmKaRe took place in Cologne-Poll on October 22, 2025.

All interested patients as well as the heads of the sarcoidosis network, the pulmonary fibrosis association and the self-help group Alpha1 Cologne were invited to the rehabilitation center.

The rehabilitation center was first presented by its managing director, Heike Jeß. AmKaRe is an outpatient rehabilitation center for heart, lung, and vascular conditions in Cologne. Each rehabilitation program lasts three weeks and is conducted full-day, five days a week. A pick-up service from home is offered upon request.

There is generally no difference between applying for inpatient or outpatient rehabilitation. AmKaRe is happy to assist with the application to the pension insurance provider or health insurance company. At the beginning of the rehabilitation program, a medical consultation and examination by a cardiologist or pulmonologist will take place.

The rehabilitation program itself includes a wide range of services. A team of doctors, sports scientists, psychologists, and nutritionists compiles the services and provides support throughout the rehabilitation process.

After completing rehabilitation, an affiliated physiotherapy practice is available where you can continue training or receive supplementary treatments with or without a prescription.

Of course, physical well-being is also taken care of during the rehabilitation.

After the presentation by AmKaRe, our self-help groups were given the opportunity to introduce themselves. The respective group leaders presented their work. Afterwards, there was an opportunity for personal exchange. A small buffet was also provided.

I was able to have interesting conversations with Mrs. Jeß, Dr. Schlesinger, physiotherapists and the other self-help groups.

Overall, it was a very intensive afternoon with new and interesting contacts. Regular contact was agreed upon with all participants.

I think the idea of considering outpatient rehabilitation as well as inpatient care is fantastic. Of course, AmKaRe is primarily suitable for patients who live in Cologne or the surrounding area. But hopefully, there will soon be many more outpatient rehabilitation providers in other regions.

Overall, I really liked the atmosphere at AmKaRe. Even the entrance to the park-like grounds is impressive. The overall concept, with the experienced pulmonologist and Alpha-1 expert Dr. Justus de Zeeuw, seems ideal for us Alpha-1 patients.

You can find more information at the address www.amkare.de

Please feel free to contact me if you have any further questions.

Patrick Straub, as appeared in Alpha1 Journal 2/2025.

Knowledge has never been so accessible. One click, one sentence – and an artificial intelligence formulates the perfect answer. But when it comes to one's own health, uncertainty, hope, or fear, things become more complicated.

People with rare diseases like alpha-1 antitrypsin deficiency know how arduous the search for reliable information can be. A machine that answers every question instantly seems appealing. But is it worth trusting?

What exactly is a "language model"?

When people talk about "artificial intelligence" today, they usually mean a specific type: so-called Large Language Models (LLMs). This sounds complicated, but it's essentially a computer program that has been trained on a vast amount of text. You can think of it as a huge library in which the program has learned how language works. It knows which words frequently occur together, how sentences are structured, and how to formulate a coherent response.

ChatGPT, Gemini, and other systems use this knowledge to write texts or answer questions. However, they don't think like humans – they don't truly "understand" the content. Instead, they calculate which word is most likely to follow next.

So, if you ask, "What is pulmonary fibrosis?", the program searches its internal "language world" for patterns and formulations that fit well. This creates the impression that it really knows what it's about – even though it's actually just imitating language.

How are the answers generated?

To enable such a system to respond, it was trained on billions of words from books, newspapers, and websites. This is how it learned how people write about things.

Systems such as ChatGPT or Gemini can now also access current information – for example, via an internet connection. This is called grounding. The program then specifically searches for reliable sources to verify or supplement its answer.
Nevertheless, caution is advised: Not every source on the internet is reliable, and even modern AI models can be wrong. They combine language patterns with found data – they don't "know" what is true, but only try to formulate the most appropriate answers.

Why many people find AI exciting

Those living with a rare disease know the feeling of finding hardly any helpful answers on search engines. Many affected individuals report that AI chatbots help them understand technical terms or decipher medical reports. Some use them to summarize longer texts or to formulate questions they want to ask at their next doctor's appointment. AI can also provide emotional relief: it responds instantly, it doesn't judge, and it's always available. This also demonstrates the strength of this technology: it makes knowledge more accessible. Those who have difficulty reading, seeing, or typing can communicate with it via voice input. Some even use it to translate foreign language texts or to put complicated scientific passages into simpler terms.

Where there is light, is there also shadow?

As impressive as the possibilities are, there are clear limitations. One of the biggest problems is so-called "hallucinations." This means that the AI invents things when it can't find a suitable answer. It sounds very convincing, even though what it's saying is simply wrong.

For example, if you ask about a rare side effect of a medication, the model might give a plausible but fabricated answer. This is because it doesn't "know" what is true – it generates texts that appear linguistically credible.

Data privacy is also important. Some AI systems store user input to improve their services. Depending on the provider, this can sometimes be deactivated. Therefore, anyone entering their medical history, lab results, or personal data risks this information ending up on third-party servers.

And one more thing: AI is not objective. It learns from human texts – and humans make mistakes or have biases. So if a language model has been trained on such texts, it can adopt these distortions.

How to use AI safely

You don't have to completely abandon ChatGPT and similar technologies. The key is to use them consciously and intelligently.

Here are a few simple rules:

1. Do not enter any personal data.
Do not upload names, diagnoses, or documents.

2. Always check health information.
Official sources are better: e.g., university hospitals, patient organizations, or the Robert Koch Institute.

3. AI as an aid, not as a doctor.
You can have things explained to you, but you should never base a diagnosis or treatment decision solely on that.

4. Keep your common sense.
If something sounds strange – it's better to read it again or ask someone who knows about it.

5. Ask where the information comes from.
Many AIs can now specify which sources they rely on. So, if you want to know how an answer is generated, feel free to ask: "What source are you using for this?" – this increases transparency and traceability.

Those who adhere to these principles can derive great benefit from technology without endangering themselves.

Monika Tempel, as appeared in Alpha1 Journal 2/2025.

„Winter anxiety“ and „winter blues“ are common phenomena in people with chronic lung diseases such as COPD or asthma. This article explains the underlying mechanisms, describes the impact on the lives of those affected, and provides evidence-based tips for coping in everyday life.

What does the term "winter effect" mean in the context of chronic lung diseases?

From a psychopneumological perspective, the "winter effect" in chronic lung diseases is primarily due to "winter anxiety" and "winter blues".

„"Winter anxiety" is the heightened fear of infections and acute exacerbations of illness during the cold season. "Winter blues" refers to the seasonal low mood that can manifest during the darker months as lack of energy, low spirits, sadness, and inner restlessness. Both conditions can occur together and reinforce each other. The following discussion focuses particularly on the tendency to withdraw and become withdrawn during the winter, which can be influenced by both "winter anxiety" and "winter blues.".

Gabi Niethammer, as appeared in Alpha1 Journal 2/2025.

Dear families,

It's time to focus more on our youngest, smallest, and youngest Alphas again. As the contact person for families with affected children and young people (including those with mild cognitive impairment), I'd like to share what we have planned for the near future:

• The SHG KIJU is launching as a purely virtual self-help group and is intended for all German-speaking families, thus also targeting families from Austria and Switzerland.
• I'm setting up a dedicated email list for this purpose, which I hope will continue to grow. You'll receive relevant information and invitations here. Do you have interesting tips, experiences, or memorable stories that might interest everyone? Write to me at shg.kiju@alpha1-deutschland.org and I'll check if it would be beneficial for the group.
• Would you like to connect with other families and find them in similar situations? I'd be happy to prepare a questionnaire that you can fill out if you're interested, so we can connect with other families if needed. Of course, your data will only be shared with your consent.
• On Tuesday, January 13, 2026, at 8 p.m., a virtual meeting will take place via Zoom. Dr. Alexander Weigert and Dr. David Katzer from the University Hospital Bonn will give a brief presentation on interesting facts about the genetic defect, introduce their important Alpha1 Children's Registry, and answer all your questions. If desired, the evening can also continue without medical support, allowing you to use the time to get to know each other better.
• At our Alpha1 Information Day on April 25, 2026, in Bad Wildungen, a two-hour workshop focusing on children and adolescents will take place in the afternoon. This workshop will be led by Dr. Marie Korell and Dr. Eva-Doreen Pfister, both from Hannover Medical School. Dr. Korell, a resident physician, is planning a translational research project on potential influencing factors on the course of Alpha-1 in children and adolescents.

Professor Rainer Ganschow from the University Hospital Bonn commissioned a short but worthwhile video featuring a patient's story. Thank you, dear Emely, for your courage!

I look forward to exchanging ideas with you all.

Marion Wilkens, as appeared in Alpha1 Journal 2/2025.

Bronchiectasis refers to a persistent widening of the airways (bronchi) with impaired self-cleaning mechanisms of the lungs. This leads to persistent mucus production, chronic cough, recurrent infections, inflammation, and often, over time, a deterioration of lung function.

Alpha-1 antitrypsin deficiency (AATD), like other causes, can play a contributing role in the development of bronchiectasis. If the body lacks sufficient amounts of the protective protein alpha-1 antitrypsin, lung tissue is significantly more susceptible to damage from the body's own enzymes (e.g., neutrophil elastases). Over time, this can weaken the bronchial walls, impair the clearing of accumulating mucus from the airways, and ultimately contribute to the development of bronchiectasis.

For patients with AATTM, this means: Bronchiectasis is not uncommon, but a possible consequence – and should therefore be investigated by a doctor at an early stage if symptoms such as chronic cough, increased sputum production or frequent infections occur.

Why bronchiectasis in AAT deficiency deserves special attention

The typical symptoms – cough, sputum production, shortness of breath, and susceptibility to infections – often overlap with those of "conventional" COPD, asthma, or pulmonary emphysema. The underlying cause (e.g., an autoimmune thyroid disease) is therefore frequently overlooked. By the time bronchiectasis is diagnosed, the structural changes are usually already irreversible. Early detection can help slow its progression through appropriate therapies, physiotherapy and respiratory therapy, infection prophylaxis, and regular checkups.
For people with AAT deficiency, there is an established, specific therapy: replacement therapy, which can slow the progression of pulmonary emphysema and theoretically also help to limit bronchial damage. Therefore, it is very important that affected individuals and treating physicians keep bronchiectasis in mind as a possible complication of AAT deficiency and not only assume classic emphysema or COPD scenarios.

New developments: Drug approval for bronchiectasis

A major advance for the treatment of bronchiectasis, including for patients with AATD, is the recent approval of the first specific drug: The orally administered drug brensocatib (trade name BRINSUPRI®) was approved in November 2025. European Commission approval for the treatment of non-cystic bronchiectasis (NCFB) received. This is therefore for the first time an approved, causal therapy option in fibrosis bronchiectasis for many affected individuals.

The approval applies to patients aged 12 years and older with at least two exacerbations (infection-related or worsening episodes) in the previous year. In studies – including the large-scale phase 3 ASPEN trial – brensocatib demonstrated an approximately 201-fold reduction in the annual exacerbation rate, longer time to the next episode, and a slower decline in lung function. This drug could therefore be a valuable new option, especially for people with severe disease, frequent infections, or limited responses to standard therapy. For people with AATD and concurrently diagnosed bronchiectasis, this approval offers hope – naturally, the treatment decision must be made individually by the doctor and patient.

Since this topic affects many Alphas, we have launched a new patient information leaflet on AATM and bronchiectasis.

Visit our new Information page, which specifically deal with the topic of „Alpha-1 & Bronchiectasis“ for those affected, relatives and interested parties This section deals with the topic. There you will find clearly presented explanations, background information and helpful advice on diagnosis and therapy.

The content of this page is currently being reviewed by Dr. Pontus Mertsch. We are pleased to announce that he will soon be reporting on new developments – especially important at a time of significant progress due to regulatory approvals and increased research. Particularly valuable: On this page, you will find practical tips on how to better manage AAT deficiency and the associated risk of bronchiectasis, as well as how to effectively plan treatment and preventative care.

Therefore, it is important that patients, relatives and treating physicians inform themselves now and think together about an optimal therapy plan.

If you or a close relative suffers from AAT deficiency: Please note that Bronchiectasis is a frequently underestimated but serious complication. We can present this. The new information page from Alpha1-Germany and the approval of the drug Brensocatib open up new avenues – and we hope that you can benefit from them.

Stay vigilant, stay informed – and talk to your pulmonologist about options for diagnosis, treatment and prevention.

As of December 2025

Gabi Niethammer, as appeared in Alpha1 Journal 2/2025.

Having become curious about this small musical instrument, the Kazoo, I ordered two versions from a music store, one made of plastic and one made of metal, which I would like to compare here.

The plastic kazoo, which I ordered in Alpha1 blue, is incredibly cheap at €1.90. The hole for singing into is quite large, and I find it a little difficult to close my lips tightly around it. Instinctively, I blow into it, and nothing happens! Of course, since I have to produce sounds for the device to start vibrating. A simple "lalala" sounds quite amusing and intentionally distorted. I fervently try to sing "Shine on you crazy diamond" and am surprised by how much concentration and gentle pressure I have to exert to make it produce a sound. My lungs are definitely getting a pleasant workout.

The metal kazoo, attractively designed in silver and gold and available for €4.90, has an oval opening, which I find much easier to use, as my lips close around it more easily. My Crazy Diamond kazoo sounds much more "crazy" on it, and I really like the version of "The Cuckoo and the Donkey." It sounds even more interesting and distorted than the plastic version, and my lungs get a good workout from the small, rhythmic pulses. My impression is that it definitely makes sense to buy such a small training device if you want to challenge and strengthen your lungs with gentle, rhythmic pulses. The cool thing about it is that it doesn't matter whether you can sing well or not, because the sounds are intentionally distorted anyway. Personally, I prefer the metal kazoo; I find it to be of higher quality and also more comfortable to use. The music store recommends the plastic one as a musical instrument for children.

If you don't have a music store nearby, you'll also have to factor in shipping costs. How about purchasing it together, for example, as part of a lung exercise group, to save on postage? I can easily imagine it being used there, just as much as at home. Here's to some happy singing!