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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The post Kinder- und Jugendseminar am Alpha1-Infotag 2026 appeared first on Ihr Online Portal für Mitglieder und Interessierte.

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

The post Ergebnisse und FAQ’s zur Bronchiektasen-Konferenz der ELF aus März 2026 appeared first on Ihr Online Portal für Mitglieder und Interessierte.

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.

The post Bericht zum Treffen der SHG Region Stuttgart, Juni 26 appeared first on Ihr Online Portal für Mitglieder und Interessierte.

The post Alpha1-Podcast: Alpha1 Deutschland gibt es jetzt auch aufs Ohr appeared first on Ihr Online Portal für Mitglieder und Interessierte.

Disability ID card information brochure

1 file(s) 7.17 MB

Download

or under https://alpha1-deutschland.org/flyer

The post Infobroschüre: Schwerbehindertenausweis appeared first on Ihr Online Portal für Mitglieder und Interessierte.

Vaccination protects against influenza, Covid, pneumococcus, and RSV - CSL Patient Day in Mainz

By Herbert Rude

Vaccinations have once again become a topic of discussion, especially since Robert Kennedy, a notorious vaccine skeptic, has been at the helm of the US Department of Health and Human Services since last year. "For people with alpha antitrypsin deficiency, however, the benefits far outweigh any potential harm," stated pulmonologist Camilla Lüttecke-Hecht at the Mainz Patient Day in May, which was hosted by CSL Behring as part of its regular rotation. She recommends alpha-negative vaccinations against influenza, pneumococcus, COVID-19, and RSV. "Because all of these diseases can severely damage the lungs," the doctor explained.

In severe cases, the coronavirus led to thrombosis or blood clots in the lungs, which paralyzed gas exchange. RSV can cause veritable cell debris in the airways, and pneumococci fill the alveoli with pus and damage the cilia in the bronchial system. True influenza can even trigger a so-called superinfection. In this case, bacteria also colonize the airways, which are already burdened by the viruses. "The 1918/19 flu pandemic claimed more lives than the entire First World War," says Lüttecke-Hecht. Estimates suggest up to 100 million victims.

While no vaccine can prevent disease 100 percent of the time, protection against influenza is between 40 and 60 percent, and protection against pneumococcus between 60 and 75 percent. Vaccinations offer 80 to 90 percent protection against RSV and COVID-19. "However, viral loads are much lower in infected individuals than in unvaccinated people, and the immune system fights the disease more quickly," says Lüttecke-Hecht.

Opinions that one can protect oneself against these diseases in this way, or that vaccinations themselves cause the infections, are wrong, she adds. "We can't vaccinate against a disease," the physician states. The problem is that many vaccinations are administered in the fall, when there are already many cold viruses circulating. "Some people already carry these viruses when they are vaccinated," she says. The incubation period, the time between infection and the onset of symptoms, then means that the cold only breaks out after vaccination and is then quickly mistaken for the flu.

And to avoid the viruses, one would essentially have to wall oneself off for three months, the pulmonologist continued. The viruses or bacteria are transmitted through droplets, for example, during conversation, making avoidance virtually impossible. Furthermore, the immune system needs to be constantly stimulated against viruses and bacteria. "We are still seeing the consequences of wearing masks during the coronavirus pandemic," she said. The immune system functions by having T cells in the body remember pathogens and sending out B cells, or phagocytes, to fight them. "Actually, we even need the illness to stay healthy," the doctor explained. But this is where vaccinations come into play.

The vaccinations provide the T-cells with blueprints or proteins from the viruses, "without transmitting the disease," as she emphasizes. Because children don't yet have antibodies, vaccinations are therefore particularly important for them. On the other hand, the immune system weakens with age. "That's why vaccinations are important not only for children, but also for the elderly and at-risk groups," she says.

For pneumococcus and RSV, a single vaccination is sufficient according to current knowledge. Annual vaccinations are necessary against influenza and also against COVID-19 because the viruses are constantly changing.

The next Mainz Patient Day will take place on November 14th. It is being organized by Grifols and will focus, among other things, on the Alpha-1 Centers. Further details will follow later on the website.

The post SHG Rhein Main Nahe, Bericht vom Patiententag zum Thema ‚Impfungen‘ appeared first on Ihr Online Portal für Mitglieder und Interessierte.

Travel for All
– ein deutschlandweit anerkanntes Kennzeichnungssystem.

The post Reisen für Alle – ein deutschlandweit anerkanntes Kennzeichnungssystem. appeared first on Ihr Online Portal für Mitglieder und Interessierte.