On September 24, 2022, members and interested parties met for the first time at Rohrbacher Schlösschen on the grounds of the Thorax Clinic in Heidelberg for the 1st Alpha-1 Patient Day.
After an initial get-together over coffee and tea, the event started around 9:45 a.m. in the well-attended hall with a welcome and introduction of the patient organization Alpha1 Deutschland eV by the chairwoman, Ms. Marion Wilkens.
Afterwards, I, Carsten Büch, introduced myself to the visitors and speakers as the new group leader of the Rhine-Neckar-Odenwald region.
This was followed by a presentation from the host, Dr. Franziska Trudzinski, on the topic "Diagnosis AATM - What happens next?", which was followed by Dr. Nicole Theissig's presentation on the topic "Why should I, as a patient, participate in a study?".
After a small refreshment with butter pretzels and sweet pastries, we listen to the lecture by Dr. Maria Ada Presotto entitled "How do I get fit for autumn?".
Together we then ended the official part around 1 p.m. with thanks to the speakers and to CSL Behring, represented by Dr. Burmeister and Dr. Kögler, who made the patient day possible.
During the subsequent lunch, experiences and contact details could be exchanged.
Numerous participants also decided to be back again on October 8th in Stuttgart for the patient day, which will include liver fibroscan.
At the end of the day, one thing was already clear:
Sequel follows ….
Yours truly, Carsten Büch
