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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.
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.
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.
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.
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
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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.
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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:
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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.
