For doctors: Brief information on the Alpha-1 test

Our first online journal is live:

Alpha1 Journal Issue 2/2025: Not only Annkatrin Siegl is storming the summit – together we are forging new paths

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A new video from Welt der Wunder on the topic of plasma and Alpha1

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Alpha1 Germany eV.

Society for Alpha-1 Antitrypsin Deficiency Patients

Dear visitors to the Alpha1 Germany website, like most people, you probably first heard of Alpha-1 antitrypsin deficiency when the condition was discovered and diagnosed in you or a loved one. For many patients, it truly is a "discovery" because, after years of uncertainty, they finally receive clarity and the best possible treatment.

However, it is equally important now to take the initiative yourself and adapt your lifestyle to the new life situation that arises in your everyday life with Alpha-1 antitrypsin deficiency – our association Alpha1 Germany would like to help you with this.

Play explainer video

New: Our weekly online lung exercise group:

Memory training with Beate – exclusively for Alpha1 members

Alpha1 Germany: Who we are, what we do

The numbers speak for themselves:

An estimated 20,000 people in Germany alone are homozygous for alpha-1 antitrypsin deficiency. This is the finding of a new study published in the International Journal of COPD 2017:12 561ff.
Only about one in ten affected individuals currently knows that alpha-1 antitrypsin deficiency is the true cause of their symptoms – the basic prerequisite for specific treatment.
On average, it takes 5-7 years to diagnose an alpha-1 antitrypsin deficiency.

We – the Alpha1 Germany association – believe: This must change! We are a national and international, non-profit patient organization whose goals are to support patients and their families in their daily lives, to inform them about their illness, and to raise awareness of Alpha-1 antitrypsin deficiency among doctors and researchers, as well as in the public eye.

We regularly organize information days for adults and children, to which we specifically invite speakers who are experts in alpha-1 antitrypsin deficiency. At least once a year, we inform our members through our Alpha1 Journal, which features contributions from medical professionals, support groups, and members.