The first patient meeting for those suffering from pulmonary hypertension (PH) and pulmonary arterial hypertension (PAH) should have taken place in the summer of 2020. However, due to the coronavirus pandemic, it had to be postponed. Since it is still not possible to predict when live meetings can take place again in 2021, the organizing team decided to hold the meeting online. 
On  April 9, the time had come – 240 participants from throughout Germany dialled into the meeting. Prof. Dr. Karen Olsson, Senior Physician in the Department of Respiratory Medicine at Hannover Medical School (MHH) and a researcher at the DZL, welcomed the attendees and introduced the first important topic of the evening. Pregnancy with PAH is a  much discussed subject of great interest to many of those affected. Dr. Jan-Christopher Kamp presented the results of his study on this subject, which followed the course of pregnancies of patients over the last few years. 
PhD student Tanja Meltendorf reported on the psychological effects of pulmonary hypertension investigated in the PEPPAH Study (Mental illness and quality of life in patients with various forms of pulmonary hypertension). The effects of the coronavirus restrictions on the wellbeing of PH sufferers have been studied by Dr. Da-Hee Park and could provide some clarification. Which socioeconomic consequences accompany an illness like this have been investigated by Jan Fuge in his doctoral thesis and the results presented. The conclusion of the wide-ranging meeting was presented by Prof. Dr. Marius Hoeper, who reported from his own experience on current therapy options and others under development. 
In addition to the presentations, questions from those affected played a particularly important role. Unfortunately, there is never enough time to respond to each and every question, but the two self-help associations, ‚Pulmonale Hypertonie e.V.‘ (Pulmonary Hypertension, registered association) and ‚Pulmonale Hypertonie Selbsthilfe mit Herz und IQ‘ (Pulmonary Hypertension Self-Help with Heart and IQ), with their longstanding and broad experience, subsequently offered to act as contacts. 
The feedback from the event was extremely positive from all sides and shows how important discussion is for those affected, even if this is only possible online. The vast interest shown and the feedback have led to plans already being made for the next meeting in 2022. 
 

Text: BREATH/AB