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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“.
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).
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:
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.
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.“
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.
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!
