Berlin, September 13-16, 2018

Do you know what is the common of the current marathon world record and the Annual PH European Conference (APHEC)? Both of them are linked to the same place and time: Berlin on the third weekend of September!

Patient representatives and leaders from all over Europe and beyond gathered in the lovely vicinity of Berlin, in Schmökwitz surrounded by forests and couple of wonderful lakes on September 13-16, 2018. This was a big change, because since 2010 we held our congresses and general assemblies each year in Barcelona, however we hope that the venue we found ensured appropriate atmosphere and nice milieu for our meeting.

We are happy that our members were well represented in the meeting. 30 countries attended the conference, with an excellent geographical coverage: Scandinavian and Baltic countries, Balkan and continental countries and many more. We were delighted that we could greet again Turkey among the attendees.
The APHEC continues to be the most important yearly event with of long standing structure. The conference, following the mandatory yearly general assembly, provides the patient association leaders with the opportunity of education, mutual learning and networking. Networking is becoming more and more important, because it makes possible to share experiences, learn best practices and information.

The general assembly was kicked-off by the president, Hans-Dieter Kulla. In the opening speech he summarized last year’s changes including the reorganization of some proceedings and shifting the official address to another district. His speech was followed by the report of the two departments. The attendees were given a short insight to the newly launched initiative, the Capacity Building Program (CBP), which is replacing the White Spot Program. Originally the aim of the White Spot Program was to launch patient associations in all European countries, but nowadays we can scarcely find countries within Europe, which do not have patient associations. It means that the next step is to help them become mature. The CBP initiative is very important for the members, thus the discussion on unmet patient needs continued on the next day and a complete workshop was dedicated to it. The attendees could also learn some important details about EU-level advocacy activities, especially the work made in connection with the European Medicines Agency (EMA) and the European Reference Network (ERN-LUNG).

Membership application was submitted to the General Assembly, but due to the short notice, decision could not be made. Decision also was not made on the annual statement in spite of the long discussions due to lack of some accounting details. All the attendees could share their standpoints, present their ideas and proposals how PHA Europe can serve better their members and how the collaboration can be enhanced going forward. Time was also dedicated to country reports: all of the delegates were asked to present the most important project or problem they have in their own country. We learned lots of suggestions and the discussion in the conference room had not ended, but continued during the dinner in the main building.

The second day was built around education and capacity building. Prof. Henning Gall from University of Giessen Lung Center arranged for us a virtual travel. We were informed of the world’s biggest PAH registry and biobank and their primary objective to find biomarkers for PH. We learned about the ongoing Pegasus study, which is aiming to find out the correlation between high altitude (eg. flying) and PAH. We virtually left Europe and found out interesting data of the Kyrgyz population living above 2,500 meters.

The day continued with different workshops thanks to our member associations’ dedication. Ieva from Latvia traditionally ran excellent workshops and made all the participants work a bit. A delicate issue, namely the provision of medications and lack of resources, had to be resolved in small group discussions, but from different aspects: from the patient associations’, payers’ and pharmaceutical companies’ point of view.

Peter from Sweden addressed the challenges patient associations are facing in terms of young patients and provided valuable insight into the Swedish register, which is publish on a yearly basis. The last presentation was a very interesting one from Tamás Bereczky, who represented the European Patients’ Academy on Therapeutic Innovation (EUPATI). Mr. Bereczky delineated the new model and infrastructure of the clinical research, the resources EUPATI can provide to adapt to these needs. During the whole presentation he emphasized the importance of patient involvement in the whole research and development (R&D) cycle. His main message was that there is a big need of empowered and expert patients and in order for us to be treated as equal partners we need to educate ourselves.
This day was even busier and tiring than the first one, thus everybody warmly welcomed the evening surprise, which was a boat trip. We could admire the beautiful lakes, the wonderful colours of the sunset and the untouched nature. We finished the tour in late evening and the dark made us to go to the lower deck of the ship, which was very busy with our talks.

One day is usually dedicated to our sponsors. These days are very challenging due to the huge amount of information, but at the same time very interesting, because we get insight into new studies and developments, future research and projects, and also receive some useful tips or practical information at first hand. This year we could hear the presentations of Actelion, Bayer and Arena. Marie Mascia-Rand from Phaware Global Association shared her ideas about the power of the social media network and also outlined useful tips how to use it.

During the whole conference the restaurant provided a great variety of foods and even the vegetarians and those who are following special diets had an ample of choices. It was also interesting to taste the special German foods and the long awaited gala dinner also met all expectations. We were very happy that the representatives of the pharmaceutical companies joined us, so we could talk with them in a very informal way.

There is no gala dinner without celebration. The winner of the photo contest (Slovenia) and the winner of the Thunderclap contest (Serbia) received a huge applause.

The last day reserved a presentation from PH expert Prof. Hanno H. Leuchte from Krankenhaus Neuwittelsbach, Munich with a provocative title: “Therapies in PAH, is your goal my goal?” In his lecture he drew our attention to the fact that physicians approach the condition from the scientific perspective, e.g. 6 minutes walking test, pressure in the lung and other comparable and measurable data. In contrary in patients life the quality of life is of high importance, how they feel, how the side effects can be minimized. Nevertheless, he pointed out that we are talking about the same disease and only our perceptions are different: there is a high correlation between the medical data of the patient’s actual condition and the way he feels.

We hope that everybody enjoyed the conference and left Berlin with good feelings and filled up with energy. We believe that everybody could learned a lot, we got to know new information, which can be shared in your respective countries.

We are looking forward to meeting with you in the next Annual PH European Conference in 2019 with an enhanced program.

Find more information and additional images in the Mariposa Journal Winter 2018.

Gergely Meszaros