Alpha1 Germany eV.

Well-informed for the new year: All the important information summarized for you. 

The new year is already picking up speed again and as usual we would like to share our newly acquired knowledge with you.

New on our homepage:

Disability ID card for Alpha-1 Antitrypsin Deficiency – well informed, better prepared

What does a severely disabled person's ID card actually mean? When does one become eligible, how is the degree of disability (GdB) determined, and what specific benefits does it offer for people with alpha-1 antitrypsin deficiency? In our latest article by Nicole Scherhag and Heike Isensee, we provide a comprehensive overview – from the application process and relevant disability markers to options for appealing if the decision doesn't reflect the actual limitations. We also recommend the webinar recording on severe disability (CSL Behring in cooperation with Alpha1 Germany), which offers many practical insights.

Good to know: Our advisor, Nicole Scherhag, is an experienced contact person for social law. If you have any questions or uncertainties regarding applications, disability ratings, or appeals, please feel free to contact her – you can find her contact details on our website. Homepage under „About us“.

To the article

New guideline for follow-up care after lung transplantation 

You will also find a new post on the Transplantation page, as there has been a new [section/section/etc.] since the end of the year. Guideline for follow-up care after lung transplantation for greater safety and clear recommendations for patients.

It was created under the leadership of the German Society for Pneumology and Respiratory Medicine (DGP).

To the article

New information page from the ELF on the topic of "Sputum"„ 

In the newsletter of European Lung Foundation (ELF) We have discovered the following for you and incorporated it into our homepage:

„"Sputum: A Guide for People with Lung Diseases"“

How to submit a sputum sample and what sputum actually is – the ELF has summarized this and much more for patients, which can be read at:

Read here

Update: Vaccination recommendations for adults in pulmonology 

Shortly after sending out our newsletter on the topic of vaccination, an overview appeared in the journal Pneumology:

„Recommendations for adult vaccination for pulmonologists“

The illustration in Figure 1, which should be found in every doctor's office, is particularly well done.

To overview

Progress in the development of rare disease drugs to treat alpha-1 antitrypsin deficiency: a 2025 update from the FDA and EMA. 

A great piece of work by the Heidelberg team led by Prof. Franziska Trudzinski and Dr. Philipp Höger, which gives us hope for the future.

The very first sentence speaks to our hearts:

„Research into safe and effective therapies for alpha-1 antitrypsin deficiency (AATD) has been ongoing for over four decades. The medical need for better treatment options remains high: patients eagerly await safe, effective, and convenient therapies that treat both the lungs and other organ manifestations of AATD.“

To work

A note from us: Registration for the members' meeting and the information day

However, it's not just important announcements that warrant a newsletter; we would also like to remind you that the registration deadline for the Annual General Meeting and the Information Day is January 18th. While you can still register after that date, we can no longer guarantee hotel rooms. Early registration is crucial for our planning, and we look forward to your participation.

All information and the registration link can be found on our website.

To register

Briefly noted: Further interesting information

We have some good mindfulness exercises for you on the LMU Hospital website found. In particular, exercises No. 4 and 5 are suitable for patients with chronic lung diseases and should be practiced even before the onset of shortness of breath.

Last night, the first online meeting of the newly founded support group for children and adolescents took place. Twenty parents joined via Zoom and received comprehensive information about AATM from Dr. Alexander Weigert, a pediatric gastroenterologist at the Bonn University Hospital. Afterwards, there was ample time for questions and discussion.

We would like to offer this format regularly for families of affected children and young people (including PiMZ). Please feel free to contact Ms. Niethammer at shg.kiju@alpha1-deutschland.org, if you would like to be added to the group.

We wish you a wonderful 2026 with wonderful moments of well-being, enriching encounters and good health!

Alpha1 Germany eV.

From the funding award, new therapies and our information day 2026

One of the two 2025 funding awards of the MDGP (Central German Society for Pneumology and Thoracic Surgery e. V.) was awarded at the 27th Autumn Meeting from November 14th to 15th, 2025 in Magdeburg to:

Dr. med. Andreas Hoheisel, Leipzig/Freiburg (Editor)
Non-targeted screening for alpha-1-antitrypsin deficiency

We are delighted that Dr. Hoheisel has once again raised awareness and provided new data on the topic of alpha-1 antitrypsin deficiency, and we would like to present this to you in more detail today. You can find this and many other articles in our newly published Alpha1 Journal.

To the Alpha1 Journal

New study on panniculitis in Alpha-1 – finally more data

A current Publication in PLOS ONE (Townsend et al., 2025) is the first to systematically examine how people with alpha-1 antitrypsin deficiency (AATD) and Panniculitis experience their illness.

The study is based on an international survey of 41 affected individuals – a rare approach given the very limited data available to date. It reveals that panniculitis in Alpha-1 typically manifests as painful, nodular skin lesions, often on the legs or arms – sometimes accompanied by ulcers or oily discharge. The experiences of those affected clearly demonstrate the urgent need for increased medical awareness, early diagnosis, and improved access to effective therapies.

This study is an important step – because although panniculitis is known as a possible consequence of AATD, there has been little sound information about the actual burden on those affected.

Treatment options for bronchiectasis

The European Commission has BRINSUPRI® (brensocatib) has been approved as the first and only licensed therapy for the treatment of non-cystic bronchiectasis in the EU. The oral treatment is available from age 12 for patients with recurrent exacerbations and could help reduce the frequency of attacks and improve quality of life. Access for affected individuals is expected in EU countries from the beginning of 2026.

For further information, please refer to the Press release by Insmed, published on November 18, 2025

Just a quick reminder: Alpha-1 antitrypsin deficiency is one of the causes of bronchiectasis. Therefore, this medication could also be of great importance to some alpha-1 patients.

More information!

Treatment options for Alpha-1 patients  

Sanofi Efdoralprin alfa It receives orphan drug status in the EU for the treatment of emphysema caused by alpha-1 antitrypsin deficiency.

This designation, orphan drug status, recognizes the high unmet medical need and supports the further development of the drug. Phase 2 data showed promising results compared to standard therapy. Safety and efficacy are still being evaluated in studies, about which we will inform you next year.

For more information, please refer to the Press release from Sanofi, which was released on December 17th.

Unfortunately, not all studies make it to approval: Kamada announced that the Phase 3 study for an inhaled Alpha-1 Antitrypsin (AAT) drug is being terminated.

The so-called InnovationThe study was discontinued after a planned interim analysis because it was not expected to meet the primary efficacy endpoint – a measurable improvement in lung function. The decision was based on an analysis of feasibility (both economic and in terms of benefit) and is not related to safety concerns.

Kamada expressly thanks the participating patients, physicians, and study centers for their commitment and emphasizes their continued involvement in the Alpha-1 community. The company distributes the product in many countries (not in Germany). GLASSIA®, an established intravenous AAT therapy.

Despite this setback, Kamada confirms its financial targets for 2025 and expects double-digit growth in revenue and profit for 2026 – supported by an existing product portfolio and further business developments.

More information can be found in the press release.

Help research respiratory diseases – from the comfort of your own home  

Respiratory illnesses such as colds, influenza, or COVID-19 affect a large number of people every year. To better assess the spread and development of these infections, scientists rely on the support of the public.

With FluWeb Since 2011, the Robert Koch Institute (RKI) has operated an online platform where citizens can voluntarily provide information about their health. Participants anonymously report once a week whether they have recently experienced any new respiratory symptoms or have remained healthy. This brief process, requiring only about one minute, provides valuable data that allows for a more accurate assessment of the infection situation in Germany.

Regular participation therefore makes an important contribution to health research – and also offers the opportunity to participate in prize draws.

More information!

A note from us:  

The invitation to the general meeting on April 24th and the information day on April 25th, 2026 has been sent to our members. The event will again take place at Maritim Hotel, The event will take place in Bad Wildungen, and we expect approximately 250 people to attend. Guests are very welcome.

Further information & registration

___________

During the winter months, people usually find a little more time for reading and watching videos. A special kind of training is available at... Selpers Published: Short units provide a clear overview of syringes, their use and administration, and how to deal with the fear of needles.

____________

Finally, we would like to tell you the story of our member Dr. Frank Willersinn. The video was created during a workshop with Takeda, in preparation for Alpha 1 Awareness Month in November:

Watch the video

____________

And now we're taking a break until the new year.

We wish you a peaceful Christmas and look forward to many news updates and a lively exchange with you in 2026.

Alpha1 Germany eV.

November is Alpha-1 Awareness Month!

The Alpha-1 Centers, under the leadership of the German Respiratory League, have sent an important signal with two webinars for medical professionals to raise awareness of Alpha-1 Antitrypsin Deficiency (AATD).
One of the webinars is already available as a recording; the second will also be available online shortly. More information can be found on the Alpha-1 Center website at:

www.alpha-1-center.org

The webinar on November 4, 2025, also provided the impetus for this newsletter. We subsequently asked our advisory board member for prevention, Dr. Alexander Rupp from Stuttgart, to contribute an article on vaccination.

November is a global awareness day for Alpha-1 Antitrypsin Deficiency, with the aim of raising awareness among both doctors and patients.

Those affected can also take action this month: Talk to people around you about the condition, share informational materials, or seek advice on whether an Alpha-1 test might be beneficial for you or your family. Early detection is crucial for targeted treatment and improving quality of life.

Together we are setting an example for more knowledge, more understanding and better care for Alpha-1 Antitrypsin Deficiency.

November is also the time for vaccination…

by Dr. Alexander Rupp/Stuttgart

As the days grow shorter, not only does cold and flu season approach, but it's also the ideal time for many important vaccinations. While the flu vaccine is now familiar to many, there's often uncertainty surrounding other topics:

• Do I really need a COVID-19 refresher course?
• What is the deal with the new pneumococcal vaccine?
• And what exactly is RSV – a virus that can be dangerous especially for older people and infants, but hardly anyone knows about it?

It is becoming clear right now that so-called "vaccine fatigue" is increasing in Germany. According to the Robert Koch Institute (RKI), fewer than 50 people in some age groups have been vaccinated against influenza, and participation in COVID-19 booster shots is also significantly below the recommended level.

Many people feel confused – too many vaccines, too many recommendations, too little guidance. Yet targeted vaccinations can prevent serious infections, avoid hospital stays, and significantly reduce the risk of secondary illnesses. Because most vaccinations are administered with so-called "inactivated vaccines," they cannot cause the disease against which the vaccination is given.

Tabel: Data taken from: Epidemiological Bulletin 50/2024

In this newsletter, we would like to give an overview of which vaccinations are particularly important in autumn and winter – from the well-known flu vaccination to the new pneumococcal vaccine and the RSV vaccination, as well as booster shots against COVID-19 and the sensible protection against hepatitis A and B, especially for people with chronic lung diseases. or alpha-1 antitrypsin deficiency.

Family members should also be vaccinated – because vaccination always protects the people around us as well.

Recommended vaccinations (lung & AATM)

Influenza (flu)

Influenza is a contagious viral infection that occurs particularly in winter. Vaccination protects against severe cases.
Recommended for:

• People aged 60 and over (preferably with a high-dose vaccine or a vaccine with an adjuvant)
• Pregnant women from the 2nd trimester onwards
• Children and adults from 6 months of age with certain pre-existing conditions (e.g. respiratory, heart or metabolic diseases)
• Medical personnel or people with frequent contact with many people

Pneumococci

These bacteria can cause pneumonia, meningitis, or blood poisoning. Vaccination protects those who are particularly at risk.

• Everyone aged 60 and over
• Children and adults with chronic illnesses (e.g. lung, heart, immune system)
• Adults aged 18 and over with health risks
• People with professional contact with metals (e.g. welders)

COVID-19

The Corona vaccination continues to protect against severe cases of the disease.
Recommended for:

• Adults between 18 and 59 years of age, if they have had fewer than 3 contacts with the virus or the vaccine.
• Everyone aged 60 and over, pregnant women and women of childbearing age

Recommended annually for:

• People aged 60 and over
• People with pre-existing conditions (from 6 months after the last vaccination or infection)
• Residents of care facilities
• Healthcare and nursing staff
• Relatives or close contacts of people with weakened immune systems

Hepatitis A and B

Hepatitis is a viral inflammation of the liver. There are two main types: A and B.

Hepatitis A vaccination is recommended for:

• People with sexual risk factors (e.g., frequently changing partners)
• People who inject drugs
• People with liver disease
• Residents of facilities (e.g. psychiatric, nursing or disability facilities)
• People with occupational contact with blood, wastewater or children
• Travelers to countries with an increased risk of hepatitis A

Hepatitis B vaccination is recommended for:

• People with weakened immune systems
• People who have had contact with people infected with hepatitis B
• Drug users, inmates, residents of institutions
• People with occupational risk (healthcare)
• Travelers to countries with increased risk

Shingles (Herpes zoster)

Shingles is caused by the chickenpox virus and can be very painful.
Recommended for:

• Everyone aged 60 and over (2 vaccinations 2-6 months apart)
• People aged 50 and over with chronic illnesses (e.g. COPD, asthma)
• The live vaccine is no longer recommended.

Whooping cough (pertussis)

Whooping cough can also affect adults and is particularly dangerous for babies.
Recommended for:

• Adults when their tetanus-diphtheria booster is due (vaccine: Tdap)
• Pregnant woman in the 3rd trimester
• Close contacts of newborns (at least 4 weeks before birth)
• Healthcare personnel – refresher training every 10 years

RSV virus

The RS virus can cause respiratory infections, especially in older people.
Recommended for:

• People aged 75 and over (one-time vaccination)
• People between 60 and 74 years of age with serious underlying health conditions or in care facilities
• The best time for vaccination is in September or early October.

Recommendations of the Standing Committee on Vaccination 2025

Events in November 

There is once again an online patient forum for lung patients:
Living better with chronic lung disease

• When: Wednesday, November 12, 2025, 4:30 p.m. to 7:00 p.m.
• Where: On-line: You will receive the link after your registration.

You can find more information on the Lung Information Service website.
To register

On November 15th is World COPD Day. We will also be active here; more information will be available on our social media channels that day. LinkedIn and Instagram.

Healthy through the immune system – recipe for „Golden Milk“ 

A warming drink for cold days – with turmeric, ginger and milk (or plant-based milk).
Ingredients:

• 250 ml milk or oat milk
• 1 tsp turmeric
• ½ tsp cinnamon
• 1 pinch of pepper
• 1 tsp honey (to taste)
• 1 small piece of fresh ginger, grated

Bring everything to a boil briefly, let it steep for 5 minutes – done.

Turmeric has anti-inflammatory properties, ginger promotes blood circulation, and the warm drink is wonderfully relaxing before bedtime.

Alpha1 Germany eV.

The quote „It is not the great victories that carry us through life, but the many small breaths in between“ is attributed to the German writer Carl Zuckmayer.

It is often the seemingly insignificant moments that give us strength – a friendly glance, a warm drink, a few minutes of conscious breathing by an open window. These small moments make everyday life with Alpha-1 easier and remind us that quality of life is not only found in research results or medical reports, but also in the things that make us feel good and bring a smile to our faces.

Naturally, we hope for great victories in relation to the AATM, and so we will gladly keep you updated when we receive important information, e.g., about studies, science, or politics.

Separate ICD code for alpha-1 antitrypsin deficiency

The ICD-10 is the 10th version of the International Statistical Classification of Diseases and Related Health Problems, a medical classification list of the World Health Organization (Wikipedia).

Previously, alpha-1 antitrypsin deficiency (AATD) was coded in Germany under the very general category "Other metabolic disorders." This made it difficult to clearly identify the condition, collect accurate case numbers, and plan specific therapies and studies. Since January 1, 2025, it now has its own ICD code, E88.00. This offers you, as a patient, several advantages:

• Clear diagnosis and differentiation: Your clinical picture will no longer be confused with other metabolic disorders.
• Improved care and access to studies: Doctors can plan suitable therapies more effectively, and research groups can more easily find participants for new treatment studies.
• More precise documentation and cost overview: Thanks to the clear coding, health insurance companies and hospitals can better understand the actual treatment effort.

Far too few doctors are aware of this change, raising the question of whether you, as a patient, are already correctly coded. Inform your healthcare providers about it, because using the new code helps to make our condition more visible in the healthcare system and, in the long term, improve treatment options and raise awareness of AAT deficiency.

For coding.

PerMed-COPD informs: New newsletter for study participants

As described in detail on page 59 of our journal, we are supporting the PerMed COPD research platform as a patient advocacy group. A first report has now been published for participating patients. Newsletter, who provides information about the study and other COPD-related topics, such as vaccination.

We are delighted to see that our work is bearing fruit. Alpha1 Germany is explicitly featured in the newsletter and is allowed to be included in the newsletter. Recruitment video discussing patients' rights.

If you are interested in participating, please contact one of the study centers. Even if not all centers are recruiting yet, you can already register your interest.

You can find more information here. here.

And please note: Webinars on COPD are planned for early 2026. As always, these dates will be available in our event calendar.

Still not enough information about studies in general? Then we have a good overview for you:

The EMA presents an online map of the EU on the public website of the Clinical Trials Information System (CTIS), where you can see all the locations in Europe where clinical trials are being conducted (clinical trial map).

The map is intended to provide patients and healthcare professionals with easy access to comprehensive real-time information about clinical trials in their region, thereby improving potential access to clinical research in the European Union.

Quick tip: Try different spellings, such as Alpha-1 Antitrypsin Deficiency or AATD or AATM – there is still room for improvement here.

Further information about the map can be found in the Press release.

A note from us: Alpha1 Germany is not only on Instagram, but now also on LinkedIn!

Some might think: Why only now? Because we met Annkatrin Siegl. She's a member of Alpha1 Germany and has a very unique story, like so many of us.

To prevent others from suffering the same fate, she offered to help us raise awareness of Alpha-1 Antitrypsin Deficiency. Within just a few conversations, she became our volunteer communications consultant and thus a part of the active team. Quite by chance, she's a PR manager and an absolute expert in all things communications.

Follow us, share our posts whenever you can, and make sure everyone knows about us soon!

Visit the LinkedIn profile of Alpha1 Germany.

Getting through autumn well: With tea, chocolate and an anti-inflammatory diet

With autumn comes vaccination season and, unfortunately, often the first colds. Many helpful tips on "anti-inflammatory nutrition" can be found in the following article from Apotheken-Umschau (a German pharmacy magazine).

Regarding the article in Apotheken Umschau.

What definitely feels good is to make yourself comfortable on the sofa with a good cup of tea, a piece of dark chocolate or a handful of nuts when it's cold and wet outside, and simply enjoy the little things.

Alpha1 Germany eV.

Our first 2025 edition is published digitally – modern, fresh, and with a clear new layout. Enjoy comfortable reading on your computer, tablet, or smartphone with a practical search function, intuitive navigation, and resource-efficient design – available now as a flipbook for everyone. Feel free to form your own opinion.

Important information for Alpha-1 Antitrypsin Deficiency patients: Access to gene therapy has been improved!

The 2024 annual report of the Federal Office for Social Security (BAS), published in August 2025, contains a clear and guiding message for people with rare diseases such as alpha-1 antitrypsin deficiency: If gene therapy is approved, reimbursable and medically indicated, health insurance companies must not block it for cost reasons.

The Federal Office for Social Security (BAS) emphasizes that gene therapies, within the framework of the statutory orphan drug privilege, should be considered superior to less expensive established therapies. Health insurance companies may not use the argument of cost-effectiveness to deny eligibility for gene therapy.

Why is this so important – also for Alpha-1 patients?
Alpha-1 antitrypsin deficiency is classified as a rare disease – meaning this regulation directly applies to us. Even though gene therapies are not yet widely used, the BAS's position provides an important legal basis and political direction, as it strengthens patients' rights to access innovative therapies.

If gene therapies for Alpha-1 are developed and approved, you and your doctors can invoke this position to pursue claims.

Click here for the full report.

New hope for Alpha-1 patients: Progress with WAVE RNA therapy

Let's stay with the new therapies that are under development: As described from page 53 in the Alpha-1 Journal, there are many approaches that have made it into preclinical research and the first phases of studies.

Due to current events, we would like to discuss WAVE today:

WAVE Life Science has announced the first, very encouraging, results from the Phase 1 and Phase 2 clinical trials announced below. as a press release dated September 3, 2025 and very detailed published as part of an investor conference. According to the report, an intervention at the RNA level*, administered via subcutaneous injections, has successfully stimulated the production of healthy M-AATs and reduced the production of the clumping-prone Z-AAT in patients with ZZ. The aim is to improve lung protection and clear the liver of deposits. No concerning side effects have been observed to date. In one participant who simultaneously developed an infection unrelated to the trial medication, it was demonstrated that the release of healthy M-AATs increased during the inflammatory phase, as expected and anticipated.

Difference between DNA and RNA
DNA is the stable archive of genetic information, in which all the blueprints for the body are stored, while RNA is a short-lived working copy of this information that the cell uses to actually implement the blueprints.

Below we provide you with the following additional information that has been made available to us:

• Letter from the Aachen Recruitment Center
• Flyer for the Wave clinical study
• Information can be found on the manufacturer's study page.

And speaking of Aachen…

Heartfelt Spotlight: Dr. Malin Fromme receives prestigious EKFS Memorial Scholarship

Many of you already know her: We are delighted to introduce you to Dr. Malin Fromme, a young scientist whose enthusiasm and commitment are not only impressive, but have now also been recognized with a significant award: Dr. Fromme from the Department of Internal Medicine III at University Hospital RWTH Aachen received the prestigious Else Kröner Memorial Scholarship in 2025. Congratulations!

We have often experienced firsthand Dr. Fromme's passionate and dedicated research into liver diseases, particularly alpha-1 antitrypsin deficiency, and have had the pleasure of encountering her friendly and competent manner. Another of her research projects focuses on the endoplasmic reticulum (ER) – that delicate cell structure often overlooked but essential for liver health.

The Else Kröner Memorial Fellowships They support outstanding young physicians: They receive two years of financial support to dedicate themselves fully to their research. And for Dr. Fromme, that means: time, resources – and above all, space for creative, in-depth research.

With the scholarship, she will be able to examine the collected AATM patient samples and the inducible pluripotent stem cells (iPSCs) generated from them using state-of-the-art methods – including deep visual proteomics, single-cell proteomics (SCP) and single-nucleus RNA sequencing (snRNAseq).

The goal is to better understand the complex processes of this liver disease, to predict its course more accurately, and to identify predictive biomarkers – thereby offering new hope not only to children but also to adults. Furthermore, their findings could be applied to other liver diseases.

We hope that Dr. Fromme's work will soon bear fruit – be it through new diagnostic tools or therapeutics. And perhaps, who knows, this will mark the beginning of a line of research that could open up new perspectives for many people with liver diseases in the long term.

Upcoming events

And as always, we end the newsletter with our upcoming dates and something to try out:
After we had the opportunity to meet Kathrin Skoupil at a lecture on mindfulness and resilience as part of an AlphaCare (Grifols) event in Mainz, We have linked this topic here for you to try out.

At the bottom of the page you will find an exercise for breath observation.

Autumn is approaching, make the most of the beautiful days outdoors, and remember to check your vaccination status!

Your Alpha1 Germany Team

Alpha1 Germany eV.

Wie im letzten Newsletter angekündigt, möchten wir Sie in die spannende Welt der Forschung entführen – hin zu möglichen zukünftigen Therapien und der daraus entstehenden Hoffnung.

Der Alpha-1-Antitrypsin-Mangel steht im Fokus zahlreicher Studien, und über einige davon werden wir in den kommenden Wochen berichten. Auf der Seite clinicaltrials.gov finden sich aktuell 132 Studien zu diesem Thema. Filtert man die Ergebnisse auf Studien, die rekrutieren oder kurz davorstehen und die, die bereits laufen (Rekrutierung abgeschlossen), bleiben immer noch 31 relevante Forschungsprojekte übrig. Nicht von allen werden wir berichten können.

Beginnen werden wir mit der Studie von Takeda, gefolgt von Wave, Intellia und vielen mehr, auch ein Artikel über den möglichen Einsatz von Biologika ist dabei. Unsere Newsletter beleuchten innovative Therapieansätze wie DNA-Editing, Gene-Addition, RNA-Editing und mehr. Ihnen sagen diese Begriffe nichts? Genau deshalb werden wir in den nächsten Ausgaben tiefer in diese Themen eintauchen. Lassen Sie sich überraschen!

Künstliche Intelligenz in der Medizin: Chance oder Risiko? Jetzt zum Webinar anmelden!

In Kooperation mit der Firma Grifols möchten wir Sie auf eine mögliche Zukunft vorbereiten – oder einfach über den Einsatz von künstlicher Intelligenz (KI) in der Medizin diskutieren. Ist KI eine große Chance, insbesondere für seltene Erkrankungen? Oder birgt sie eher die Gefahr, ein angsteinflößendes „Arzt-ersetzendes Monster“ zu werden, das uns in die Irre führt?

In the KI-Webinar am Donnerstag, den 21.11.2024, um 19:00 Uhr (Dauer: 90 Minuten) laden wir Sie unter dem Motto „Finde das Zebra – finde Alpha“ dazu ein, mehr über die Bedeutung von KI für Patienten zu erfahren. Fabian Lechner von der Philipps-Universität Marburg spricht über „KI und seltene Erkrankungen – Wie wir schneller fündig werden“. Doch was passiert, wenn „Dr. Google“ versagt? Kann KI den echten Arzt unterstützen? Diese spannende Frage beleuchtet Dr. Rainer Glöckl von der Schön Klinik Berchtesgadener Land.

Freuen Sie sich auf einen Abend voller Erkenntnisse, der selbst einen Krimi in den Schatten stellt!

Zur Veranstaltung geht es hier!

Ausgezeichnet: Gemeinsam für mehr Lebensqualität!

Wir bleiben beim Thema Zukunft, denn was wir heute trainieren, das ist der Baustein für ein längeres Leben mit sehr viel mehr Lebensqualität!

Umso mehr freuen wir uns, dass unser Projekt „Fit in Körper und Geist“ ausgezeichnet wurde! Mit dem dritten Platz beim Förderpreis des Fonds der Arzneimittelfirmen und einer Fördersumme von 3.000 € können wir unsere Online-Stunden für Lungensport und Gedächtnistraining weiterhin anbieten und absichern. Die Preisverleihung am 4. November war ein besonders bewegender Moment.

Mehr dazu lesen Sie in der Pressemitteilung:

• Zur Pressemitteilung

Wenn Sie an unserem Online-Angebot teilnehmen möchten, finden Sie alle Informationen hier:

• Weekly online lung exercise group

• Memory training with Beate – exclusively for Alpha1 members

November ist Alpha-1-Awareness-Month

Ein kleiner Tipp: Nutzen Sie den November, um Nachbarn und Freunde zu einer gemütlichen Teerunde einzuladen. Teilen Sie Ihre Geschichte – erzählen Sie, wie es Ihnen mit Ihrer Erkrankung geht und welche Strategien Ihnen helfen, gut durch den Winter zu kommen. Sie werden überrascht sein: Oft kennt jemand jemanden, der wiederum jemanden kennt …

Auch das ist der Alpha-1-Awareness-Month!

Mehr dazu lesen Sie in der Pressemitteilung:

• Zur Pressemitteilung

Wenn Sie an unserem Online-Angebot teilnehmen möchten, finden Sie alle Informationen hier:

• Weekly online lung exercise group

• Memory training with Beate – exclusively for Alpha1 members

Europäischer Online-Patiententag: Jetzt als Aufzeichnung verfügbar!

Im letzten Newsletter haben wir den europäischen Online-Patiententag in Kooperation von ELF, EARCO und der Alpha-1 Europe Alliance beworben, sollten Sie ihn verpasst haben, er ist jetzt auch zum Nachschauen verfügbar: Hier geht es zur Aufzeichnung.

„Einfach mal durchatmen – Ihre 10-Minuten-Auszeit“

Zum Abschluss möchten wir Ihnen eine besondere Empfehlung geben: Gönnen Sie sich zehn Minuten bewusstes Durchatmen – eine Anregung des Teams „Zwanzig-Neun-Fünf“ aus Essen, Spezialisten für Atemtherapie und -training.

Den Download zur Übung finden Sie hier am Ende der Seite. Probieren Sie es aus und genießen Sie den Moment!

Alpha1 Germany eV.

Everything you need to know about autumn, summarized for you!

Autumn time,

After a very busy year so far, we would like to use the days when you might prefer to stay indoors to provide you with new information.
With this newsletter, we would like to start the month of November, which is also "Alpha-1 Awareness Month", the month that is used worldwide to raise awareness of the disease!

In the coming weeks, we would like to launch a newsletter series reporting on new developments in research, naturally always combined with everyday tips and upcoming dates.

But today we're talking about the important things that make autumn special – no, unfortunately not about autumn leaves, pumpkin soup, or cozy tea times…

1. Influenza (Flu): 

2. Pneumococci (pneumonia): 

A pneumococcal vaccine (PCV 20) has been available since the beginning of 2022. We recommend vaccination for all individuals aged 60 and over, as well as for those aged 18 and over with risk factors (such as alpha-1 antitrypsin deficiency) that can lead to severe pneumococcal disease.

For adults who have already received a vaccination with PPSV23 or sequentially (PCV13 or PCV15 + PPSV23), we recommend a vaccination with PCV20 after a 6-year interval. For individuals aged 18 and older, vaccination with PCV20 after a 1-year interval is recommended if risk factors for severe pneumococcal disease are present and their sequential vaccination series has already begun with PCV13 but has not yet been completed with PPSV23.

3. COVID (SARS-CoV-2):

We recommend a primary immunization series of two vaccine doses administered at least three weeks apart. For individuals aged 60 and over with underlying health conditions that put them at increased risk of severe illness, booster vaccinations are recommended. This also applies particularly to those infected with the Alpha-1 virus. Booster vaccinations should be administered at least six months apart. Variant-adapted vaccines should generally be given at least 12 months after the last vaccination or infection. Vaccination should preferably take place in the autumn, as infection rates are expected to rise during the autumn and winter months.

4. RSV:

A single RSV vaccination is recommended as a standard vaccination for all individuals over 75 years of age, ideally before the start of the RSV season (preferably in September/early October). A single RSV vaccination is recommended as an indicated vaccination for individuals aged 60 to 74 years with severe forms of certain underlying diseases (e.g., low alpha-1 antitrypsin levels and a high symptom burden) or for residents of nursing homes. These underlying diseases include severe forms of chronic respiratory, cardiovascular, and renal diseases, neurological and neuromuscular disorders, hematological and oncological diseases, diabetes mellitus with complications, and congenital or acquired immunodeficiency. According to current knowledge, mild or well-controlled forms of these diseases do not require vaccination.

Since August 2024, three RSV vaccines have been approved in the EU: Arexvy (for ages 60 and up), Abreysvo (also for pregnant women), and mResvia (mRNA vaccine). Reimbursement can be requested from your health insurance provider.

According to current data, RSV vaccination is a one-time vaccination and does not need to be repeated annually. Whether booster vaccinations are necessary is currently unclear. The STIKO (Standing Committee on Vaccination) will continue to carefully review the data and adjust its recommendations if necessary.

The video, recorded with Dr. Kardos, also reflects the current status of RSV vaccination.

Click here for the video

Whether it's a cold, bronchiectasis, or the effects of Covid-19, many people are familiar with the problem of struggling with mucus in the body, and especially in the lungs.

Our lung exercise trainer Peter Kukry (Peddar), himself also an Alpha-1 patient, therefore got to work and recorded the following video for us. He is supported in this by Dr. Heike Isensee, herself an active participant in the pulmonary exercise program and group leader of the Stuttgart self-help group. The entire program is complemented by the expert advice of Dr. Alexander Rupp, a pulmonology practice in the center of Stuttgart.

Sometimes simple techniques and exercises can make everyday life significantly easier, try them out!

Click here to watch the video!

• The basics of Alpha-1 (AATD) 
• Living with Alpha-1 
• The latest research + patient participation in clinical trials
• Treatment and therapy options

You can find all events up to the end of 2024 on our event overview page. Take a look, perhaps something will interest you!

Alpha1 Germany eV.

Ein Herbst voller Wissen. Spannende Veranstaltungen, Erkenntnisse und mehr!

Der Sommer neigt sich dem Ende zu – was folgt, ist der Herbst, mit frischer Luft und Temperaturen, die nicht mehr zu hoch sind. Die beste Zeit, um wieder aktiv zu werden! Und was eignet sich besser dazu, als eine der vielen guten Veranstaltungen zu besuchen, die wir Ihnen heute ans Herz legen möchten. Vom Webinar, über Selbsthilfegruppentreffen bis zur Groß-Veranstaltung ist alles dabei und sicher auch etwas in Ihrer Nähe.

Ganz besonders freuen wir uns wieder Kooperationspartner beim Süddeutschen Patient:innentag am 23.09.23 in Stuttgart sein zu dürfen, ein Tag voller Informationen und voller Wiedersehensfreude. Mittlerweile ist der Tag unter der wissenschaftlichen Leitung von unserem Beirat Herrn Dr. Alexander Rupp fester Bestandteil in unserer Alpha-1-Welt und die vielen Besucher zeigen, dass hier viel geboten wird. So gibt es die Möglichkeit zur Leberuntersuchung durch das Team um Prof. Strnad/Aachen und vieles mehr. Zu mehr Informationen und zur Anmeldung geht es here.

Ein neuer Ort für einen Patiententag ist Kempten im Allgäu. Hier findet am 30.09.23 in schönster Umgebung unter der Leitung von Prof. Dr. Christian Schumann und Unterstützung durch CSL Behring ein Patiententag mit den Themen: Diagnose AATM, Reha und AATM und die Leber anlässlich des 26. Deutschen Lungentages statt.

Sicher finden Sie auch etwas, was in Ihre Herbst-Planung passt. Es lohnt sich, immer mal wieder in unseren Veranstaltungskalender zu schauen.

Auch wir sind aktiv in den Herbst gestartet, so haben wir einen weiteren neuen Weg eingeschlagen: Alpha1 Deutschland e.V. ist jetzt auf Instagram: Unser Mitglied Frieda, 19 Jahre, hat sich bereiterklärt, für uns über die Aktivitäten der Patientenorganisation zu posten. Es soll ein buntes Gemisch aus Informationen, Terminen und Berichten auf dieser Social-Media-Plattform werden, schauen Sie doch mal vorbei und folgen uns. Vielen Dank Frieda!

Zu unserem Profil

Die SoHO Verordnung verbessern

Politisch aktiv zu sein, ist eine unserer Aufgaben. So haben wir am 12.09.2023 eine Petition zum Thema SoHO-Verordnung (SoHO = Substances of Human Origin) beim Petitionsausschuss der EU eingereicht. Diese Verordnung wird zurzeit innerhalb verschiedener Gremien der EU diskutiert und beraten, und eine Einigung über die endgültige textliche Fassung wird für das 2. Quartal 2024 erwartet.

Die SoHO Verordnung befasst sich sehr ausführlich mit den Themen Sicherheit und Qualität von gespendetem Blut, Gewebe und Zellen, und enthält natürlich auch viele für Empfänger von Plasmabestandteilen positive Ansätze. Da, wo diese unseren Interessen aber zuwiderlaufen, möchten wir mittels unserer Petition Verbesserungen einfordern. Mehr über die SoHO Verordnung finden Sie here. 

Über eine Unterstützung unserer Petition würden wir uns natürlich sehr freuen. Allerdings ist dies nur möglich, wenn sie vom EU-Petitionsausschuss angenommen und danach im Petitionsportal veröffentlicht wird. Als Petenten werden wir darüber in Kenntnis gesetzt, und wir werden Sie natürlich über den Fortgang des Verfahrens informieren.

Zu unserer Petition

Aktuelle News rund um Alpha-1-Antitrypsin-Mangel 

1. Neues von Grifols

2. Pressemitteilung von CSL Behring

Fortschritt für Patienten mit Lungenkrankheiten: CSL Behring in Marburg half bei der Gründung des Open Source Imaging Consortium (OSIC), einer KI-gestützten Datenbank, die Tausende von Lungenscans gesammelt hat. Die gemeinnützige Forschungsorganisation wird ihre Aufgabe weiter ausbauen und auch Daten über die seltene Krankheit Alpha-1-Antitrypsin-Mangel sammeln.

Regarding the announcement

3. Lungeninformationsdienst

Vielfach hört man von den Erfolgen insbesondere in der Asthma-Therapie durch Biologika, da stellt sich die Frage, warum geht das nicht auch bei COPD? Biologika werden mit Hilfe lebender Zellen von Tieren, Pflanzen oder Mikroorganismen gewonnen, die gentechnisch verändert wurden. Sie sind nicht neu, sie werden bereits seit über 40 Jahren produziert. Nun hat man erste Erfolge mit einem Biologikum (Dupilumab) bei der COPD erzielt.

Mehr zur Studie hier

4. COPD und Raucher:innen

Was schützt manche Raucher vor COPD? Ist vielleicht doch nicht alles selbstverschuldet? Im Deutschen Zentrum für Lungenforschung wurde ein Schutzmechanismus gefunden, der zukünftig für eine Risikoeinschätzung genutzt werden könnte und auch ein Ansatz für neue Behandlungsmöglichkeiten darstellt.

Der gesamte Artikel hier

WDR zu Gast beim Patiententag in Bad Wildungen

Im TV: „Ich werde Ärztin – Made in Marxloh (S03/E03)“.Die Geschichte von Şilan, die im sozialen Brennpunkt aufwächst und nun auf dem Weg ist Ärztin zu werden. Eine interessante Geschichte mit interessanten Einblicken. Und das beste: Ein kleiner Teil der Dokumentation wurde auf unserem Patiententag in Bad Wildungen gedreht, denn Şilan gehört zum Team der UK Aachen. Die knapp 30 minütige WDR Sendung ist noch in der Mediathek zu finden.

Hier zur Sendung

Rückblick auf das virtuelle 15. Symposium-Lunge vom 02.09.2023

Das Motto und Thema des diesjährigen Symposiums Lunge lautete: „Bestens informiert – von der Diagnose bis zur Therapie“. In acht verständlich referierten Vorträgen wurden nachfolgende Themen beleuchtet:

• Differenzierung von COPD, Lungenemphysem und Asthma 
• Optionen zur Inhalationstherapie bei Asthma oder COPD 
• Impfprophylaxe als wichtige Therapiesäule
• Entzündungshemmende Ernährung und Gewichtsreduktion bei COPD
• Atemtherapie – Übungen zum Mitmachen
• Erkennung und Behandlung einer exazerbierten COPD in der Lungenfachklinik
• Langzeit-Sauerstofftherapie und Nicht-invasive Beatmung, zwei wichtige Therapiesäulen
• und Palliativmedizin: Was genau ist das eigentlich? 

Sowohl die Vorträge, als auch Antworten auf vorab gestellten Fragen, können alle Interessierten ab sofort auf den Homepages des Veranstalters und Mitveranstalters unter den nachfolgenden Links aufrufen:

COPD – Deutschland e.V.
Patientenorganisation Lungenemphysem COPD Deutschland

Der nächste Newsletter ist bereits in Arbeit und wird u.a. die Themen enthalten:

• Was macht Covid-19 in diesem Winter, gibt es Empfehlungen für Alpha-1-Patienten?
• Neue Erkenntnisse vom ERS (European Respiratory Society) Kongress
• Neue Studien im Anmarsch

Wir freuen uns auf viele gute Veranstaltungen im Herbst und bleiben Sie gesund, denken Sie daran, sich einen Termin für die Grippeschutzimpfung zu holen. Bester Zeitpunkt für die Grippeschutzimpfung ist Ende Oktober oder November, da die Grippewelle oft erst um den Jahreswechsel auf uns zu rollt. Der Impfschutz ist 10 bis 14 Tage nach der Impfung vollständig aufgebaut.