Author
Marion Wilkens, as appeared in Alpha1 Journal 1/2026.
On June 20, 2026, the Jahnstadion in Regensburg was transformed from a football pitch into a meeting place for people with Alpha-1 Antitrypsin Deficiency, their families, doctors, and representatives from Alpha1 Germany. Around 100 participants accepted the invitation to the Alpha-1 Antitrypsin Deficiency Patient Day. Including speakers and participating sponsors, approximately 125 people were present throughout the day.
The event was organized by the Hospital of the Brothers of Mercy Regensburg, together with the Franconian Self-Help Group (SHG Franken), the Alpha-1 Antitrypsin Center Donaustauf, the St. Hedwig Children's Hospital Regensburg, and in cooperation with Alpha1 Germany e.V. Our special thanks go to Dr. Marc Lepiorz, head of the Alpha-1 Center, and Roland Bühner, head of the Franconian self-help group. The location itself was something special: Level 2 of the Jahn Stadium was transformed into a space for information, encounters, and exchange for one day only.
The program was as varied as it was high-caliber. The focus was on current issues surrounding the lungs and liver, substitution therapy, prevention and vaccinations, Alpha-1 in children, and the psychological burden of chronic lung disease. Prof. Dr. Pavel Strnad spoke about liver involvement in Alpha-1, its evaluation, and drug development. Prof. Dr. Joachim Ficker addressed substitution therapy and the questions "Who? When? How? Why?" Prof. Dr. Maximilian Malfertheiner presented strategies for minimizing the risk of disease progression. Further presentations were given by, among others, Dr. Alexander Kiefer, Dr. Laura Weich, Dr. Marc Lepiorz, and our advisory board member, psychologist Monika Tempel.
A particular focus was again on liver involvement in alpha-1 antitrypsin deficiency. The team from the Europe-wide Alpha-1 Liver Study in Aachen/Cottbus, led by Prof. Dr. Pavel Strnad and Dr. Malin Fromme, offered free examinations on site. These included blood tests, lung function tests, and FibroScan.® to determine liver stiffness and – if indicated – to perform genotyping. These tests are an important component of the European Liver Study, which systematically investigates liver involvement in Alpha-1-1 liver disease.
What was particularly nice was that the patient day wasn't just about lectures. There was a personal story shared between doctor (Dr. Lepiorz) and patient (Stephan Brown), which recounted their shared journey to the transplant and the friendship that blossomed. And there were opening remarks from footballer Hansi Dorfner*. In the afternoon, participants were able to exchange ideas in small groups on topics such as liver health, mental health, lung health, and self-help. Alpha1 Germany also had its own presentation. Marion Wilkens, under the motto "Giving Help – Receiving Help," presented the work of the patient organization and emphasized the importance of mutual support within the Alpha1 community.
Such a patient day would not be possible without the commitment of many involved. Special thanks are therefore due to the speakers who generously donated their time and expertise. Equally important was the support of the sponsors: CSL Behring and Grifols Deutschland GmbH, pmt Pielmeier Medizintechnik, and AOK Bayern. Practical on-site support was also provided: A liquid oxygen refill station was available for patients requiring oxygen therapy.
A big thank you also goes to the event management team at the Jahnstadion Regensburg. Their professional, courteous, and respectful support contributed significantly to making this unusual location the ideal venue for this patient day.
Following the successful launch, the patient day is intended to take place annually in the future, alternating between Nuremberg and Regensburg.
Hans Dorfner, also known as Hansi Dorfner, is a former German football player and national team player. The midfielder became famous primarily through his time at FC Bayern Munich and 1. FC Nürnberg. Today he runs his own football academy.
