Author
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.
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!
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.
