You are not alone! 

Caring for someone with alpha-1 antitrypsin deficiency is challenging – physically, emotionally, and logistically. Here is an overview of important support and tips.

Practical care tips

• Coping with shortness of breath: Stay calm, maintain an upright sitting position, use pursed-lip breathing, and use oxygen therapy correctly.
• Structuring daily life: Planning breaks together, regulating activities, using assistive devices (home emergency call system, walking aids, etc.).
• Applying for a care level assessment with the long-term care insurance fund enables financial support and relief services.

Relief options

• Respite and short-term care from care level 2 (up to eight weeks/year if you are unavailable)
• Day care or outpatient care service
• Care courses (free of charge via the long-term care insurance fund)
• Relief allowance (currently €131/month for all care levels in the case of home care)

Self-care – Important for you!

• Take regular breaks.
• Pay attention to your own health (doctor's visits, exercise, sleep).
• Get help: from family, friends, or professionals.
• In case of overload: Seek early advice or psychological support.

Key principle: Only those who have strength themselves can provide good long-term support.

Important contact points

• Alpha1-Deutschland e. V. – Central Contact Point (https://www.alpha1-deutschland.org)
• Local care support center (via health insurance company or municipality)
• Telephone counselling service: 0800 111 0 111 (free, 24/7)
• Palliative care consultation: Include it early for better symptom control and relief.

Emotional support

• Exchanging information with other family members is one of the greatest forms of relief.
• Please participate regularly in our Zoom exchange – here you can speak openly about your feelings, worries and experiences.
• Further offers: Regional self-help groups of Alpha1-Deutschland e. V.

To offer you the aforementioned emotional support, we have decided to launch an exchange via Zoom exclusively for family members on the first Tuesday of every quarter.

Welcome to the regular Zoom exchange for family members!

 What can you expect? 

• An open, appreciative circle of people who are in a similar situation.
• Exchange of experiences, tips and coping strategies
• Space for your feelings – joy, sadness, anger, exhaustion or hope
• Recharging together and the feeling: You are not alone with your challenges.

We will provide practical information on care, support options and relief on the homepage and in the journals.

Why this exchange is particularly valuable: 

Many relatives say: „"Finally, someone who truly understands how I feel."“ Here you can speak openly – without explanations, without justifications.

Note: Everyone is free to remain silent – no one has to say anything.

Appointments 

The exchange in this safe space will initially take place once a quarter via Zoom and will be moderated by Monika Tempel, a physician specializing in psychopneumology. She will be assisted by family member Roland Wilkens.

The meetings last approximately 90 minutes.

First appointment: October 6, 2026 at 7:00 PM.

You can find further dates at https://alpha1-deutschland.org/hilfe-fuer-angehoerige

Your active participation is most welcome! 

Feel free to bring your own topics and concerns. Whether you have specific questions about dealing with anxiety, communicating with the sick person, or simply need to vent – everything is welcome. The more you contribute, the more lively and helpful the exchange will be for everyone.

Here's how you can participate: 

Simply send us a short message to angehoerige@alpha1-deutschland.org with the subject line "Registration for family exchange".

You will then receive the Zoom link and all further information in good time before the next appointment.

We are really looking forward to meeting you and hearing your story.

As family members, you do incredible things every day – this circle is meant to do you good.

With kind regards

Monika Tempel and Roland Wilkens

angehoerige@alpha1-deutschland.org

https://alpha1-deutschland.org/hilfe-fuer-angehoerige]

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 It is with deep sadness that we announce the passing of Jürgen Frischmann, who died on April 24, 2026, at the age of 64. For many years, Jürgen served as deputy leader of our Rhein-Main-Nahe self-help group and tirelessly dedicated himself to helping people with Alpha-1 and COPD, far beyond the scope of the group activities. Despite his own serious illness, a lung transplant, and numerous health setbacks, he never lost his zest for life, his sense of humor, or his willingness to help others. His knowledge, reliability, and great humanity supported and guided many sufferers. We will remember Jürgen with gratitude as a dedicated colleague and valued friend. Our deepest sympathies go out to his family and all who were close to him.

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A contribution by Leyla Gür.

There are projects in our agency work that feel special right from the initial discussions. The video about the history of alpha-1 antitrypsin deficiency was exactly that kind of project for me. It quickly became clear: this wasn't just going to be a nice piece of social media content. This was about a story that has moved people for more than 130 years and that still holds great significance for medicine in general today.

But let's start from the beginning. Last year, I had the opportunity to speak with Prof. Dr. Sabina Janciauskiene and Marion Wilkens about the history of Alpha-1 antitrypsin deficiency, on behalf of Alpha1 Germany e.V. Prof. Dr. Janciauskiene serves as a scientific advisor to Alpha1 Germany and has been conducting research on Alpha-1 for many years. Marion Wilkens, as you all probably know, is passionately and tirelessly committed to supporting those affected by Alpha-1, their families, and raising awareness of Alpha-1, both in Germany and internationally.

We were then able to turn this conversation into a video, which is now finally available for you to watch and listen to – on YouTube and also on Spotify. Feel free to take a look.

Go to YouTube

Go to Spotify

A discovery with consequences

One thing I learned during the preparation with Sabina and Marion, and which I'd like to share as a little spoiler: The story of Alpha-1 goes far beyond the disease itself. It also tells of how medicine evolves and how individual observations can gradually form a larger picture – and why it's worth taking a closer look when symptoms don't quite fit the usual explanations.

In the video, Sabina takes us back to the 19th century, to the first traces of Alpha-1. At that time, terms like DNA, genes, or protein variants, as we understand them today, didn't yet exist. Nevertheless, researchers at that time observed that substances apparently existed in the blood that could inhibit certain protein-degrading enzymes.

The decisive breakthrough came in the early 1960s when the two Swedish researchers Carl-Bertil Laurell and Sten Eriksson, using new laboratory methods, were able to demonstrate that some patients with early-stage pulmonary emphysema lacked a specific protein: alpha-1-antitrypsin. This proved to be a far-reaching discovery! It suddenly made it clear why even people without the classic risk factors such as smoking or occupational exposure to particulate matter can develop severe lung damage – and just how incredibly versatile and important proteins in our bodies truly are.

But I don't want to give too much away. In the video, you'll learn, among other things, which scientific breakthroughs made this discovery possible, why alpha-1 antitrypsin still plays such an important role in medicine today, and how closely research, education, and personal experiences are intertwined.

Camera and action – My impressions from the filming day

What I found particularly wonderful about filming this historical video was the location itself. Being able to film at the Thorax Clinic in Heidelberg was a perfect thematic fit. Many people actively involved in Alpha-1 research work and conduct research here today – including Prof. Dr. Franziska Trudzinski. At the same time, the clinic has stood for decades for pulmonary medicine and pioneering research. Special thanks go to Mr. Frank, Prof. Dr. Herth, Dr. Oswinde Bock-Hensley, and the entire Thorax Clinic team for their great openness and for even allowing us to use the Tuberculosis Museum located in the small castle as a filming location.

Everything went perfectly on location. Our cameraman, Martin Sauer from entermedia, brought everything needed for a professional shoot – from cameras and lights to sound equipment, tripods, and a whole lot of cables. Before the actual interview could begin, everything was carefully set up, wired, and tested. Microphones were attached, transmitters stowed away, and every detail checked multiple times. What looks so easy in the video actually requires a bit of planning and work.

The conversation went not only smoothly and with great professionalism, but was also very impressive to me both in terms of content and personality. Even though I was already familiar with the topics through my preparation, it was more than inspiring to see how much energy, knowledge, and passion Marion and Sabina radiate. It made me realize once again that with illnesses like Alpha-1, it's never just about medical facts, but always about people – people who are affected, but also people who are committed and full of enthusiasm to ensuring that the former are seen, understood, and supported in the best possible way.

Far from being from yesterday: Why history can give hope

But why did we actually make a video about the history of Alpha-1? Isn't there much more exciting stuff to tell about from the here and now?

Of course, first of all, one must say: A video is only a Video. And we very much hope to be able to implement many more videos and formats in the future, which deal, for example, with current research approaches, new developments or personal stories.

At the same time, the story of Alpha-1 is much more than just a look back. It can still provide valuable insights today and perhaps even offer hope. Thanks to the special perspectives of Marion and Sabina, who have accompanied and, in some cases, actively shaped the development of Alpha-1 over many years, it becomes clear what has already been achieved. One realizes how many people have contributed to the fact that we know so much more about the disease today than we did just a few decades ago.

This also makes it clear that progress is rarely linear. Sometimes it's new technological possibilities, sometimes lucky coincidences, and often years of hard work that make the crucial difference. And sometimes it takes the courage to follow a path that doesn't seem particularly promising at first glance.

Perhaps that's precisely why history is so encouraging: it shows that developments take time and that progress is built on the knowledge and commitment of many different people. Nothing comes from nothing, and to sharpen the analogy even further: only when you look back do you see how far you've actually come – regardless of how much road still lies ahead.

So, if you ask me: Take a quiet minute – or better yet, 60. And take a look at the story of Alpha-1, as told by Marion and Sabina. Perhaps it will make it as clear to you as it did to me that looking back not only explains how we got here, but also shows what becomes possible when people work on something with curiosity, perseverance, and dedication for many years. I definitely give it my highest recommendation!

Click here to watch the video:

Go to YouTube

The post Alpha-1-Historien-Video: Wenn Medizingeschichte lebendig wird appeared first on Ihr Online Portal für Mitglieder und Interessierte.

The research team is currently conducting an important web-based patient education and patient survey on RSV respiratory disease and RSV vaccination.

Who can participate? We are looking for patients who suffer from at least one of the following conditions:

• COPD (Chronic Obstructive Pulmonary Disease)
• asthma
• Rheumatic diseases
• Diabetes mellitus

How does participation work? Participation consists of a one-time online survey with an explanatory video. Completing the questionnaire takes only about 20 minutes of your time and can be done conveniently and flexibly from home using a computer, smartphone, or tablet.

You will receive information about RSV respiratory infection and vaccination if you have the condition. At the same time, your answers will make an extremely important contribution to current clinical research and help scientists better understand the needs and realities of patients with these chronic illnesses.

Scan the QR code to go directly to the survey or here

The RheumaVir study team sincerely thanks you for your time and valuable assistance!

Poster RSV study for rheumatism, diabetes, COPD and asthma

The post Online-Umfrage zu RSV und RSV-Impfung appeared first on Ihr Online Portal für Mitglieder und Interessierte.

Are you living with prescribed oxygen therapy?

Then support our anonymous patient survey and help us better understand the experiences and challenges of everyday life from the patient's perspective.

The survey is being conducted under the direction of Univ. Prof. Dr. Rembert Koczulla (Schön Klinik Berchtesgadener Land/ Philipps-Universität Marburg).

Duration: approx. 15–20 minutes

Participation is anonymous.

More information is available here in the poster download.

Poster patient survey

1 file(s) 8.69 MB

Download

Participate now:

https://redcap.kks.uni-marburg.de/surveys/?s=LMR73K333FNKTANT

or alternatively via this QR code:

Thank you for your support!

__________________________________________

Dr. Tessa Schneeberger
Research Institute for Pulmonary Rehabilitation
Schön Clinic Berchtesgadener Land

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For many people with alpha-1 antitrypsin deficiency, especially those with advanced lung disease or requiring long-term oxygen therapy, travel planning often involves significantly more effort than for others. Those traveling with oxygen must take care of medical certificates, arrangements for supplies at their destination, airline and train company regulations, and insurance matters well in advance. Differing regulations across European countries further complicate the planning process.

This is precisely where the new „Travel with Oxygen toolkit the European Federation of Allergy and Airways Diseases Patients' Associations (EFA) Although the project was originally developed for COPD patients, much of the information is also of great benefit to people with alpha-1 antitrypsin deficiency who require oxygen therapy.

This free online service brings together a wealth of practical information in one place and helps with travel preparation. This includes, among other things:

• a detailed checklist for travel planning,
• Email templates that can be used to contact airlines, oxygen suppliers, or hotels,
• Frequently asked questions about traveling with oxygen,
• Information on portable oxygen concentrators (POCs),
• Information on insurance, medical documents and the European Health Insurance Card (EHIC),
• as well as a network of national contact points in several European countries who can provide support with country-specific questions.

A particularly helpful tip from the EFA team: Start planning your trip four to eight weeks before departure. This leaves sufficient time to obtain medical certificates, coordinate oxygen requirements with the treating pulmonologist, check the airline's requirements, and organize supplies at the destination. Airlines, in particular, differ considerably in which portable oxygen concentrators are permitted and what documentation or battery reserves are required.

You can find the EFA toolkit here. here:

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This link will take you to the summary, the video and lots more information about the event.

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Sunshine, blue skies, two punts, and lots of friendly people—what more could you want? On June 13, 2026, we met for our privately organized punt tour. Beforehand, we had a communal breakfast to settle in and get to know each other better. The trip on the Enz River was informative and scenically stunning, and gusts of wind added a touch of adventure.

In the afternoon, thanks to the financial support of CSL Behring, we were able to hold our regional meeting in the old railway carriage of the Steig 1903 restaurant. We listened to a fascinating presentation about the vagus nerve by Ms. Bolesch, were able to do relaxation exercises, and ended the day with a pleasant meal and many good conversations.

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