Castelldefels, Spain, November 29 – December 3, 2019

In 2018 we opted for a different locationand held our Annual PH European Conference in Berlin, but this year we returned tothe vicinity of Barcelona, to thelovely small village of Castelldefels –the venue which provided excellent conditions to many previous conferences and meetings. Delegates from all over Europe arrived in the last days of November with big smiles on their faces. It was not only because of the nice weather, so patients could travel despite wintertime, but the happiness of seeing each other again.

General annual meeting

Following the opening speech of Gerry Fischer, voting was made on different matters as part of the general annual meeting.The general meeting unanimously accepted Moldova and Estonia as new members. Voting was made on the financial report of 2018 and the forecast of 2019. The previous board was discharged and new board was elected: first time ever PHA Europe has awoman PH patient president –Danijela Pesic from Serbia. It is also interesting about the new board that it consists of only woman: Zdenka from Croatia, Natalia from Bulgaria, Eva from Austria, Tuulia from Finland, Tadeja from Slovenia. In contrast the auditors are men: Odd Erling from Norway and Bogdan from Romania. Let me congratulate them for their positions!

The break between the annual meeting and the dinner provided excellent opportunity to freely chat with others and share ideas. Everybody had another new and new story,so the dinner ended late night, despite everybody was tired from the travelling and we all know that tomorrow’s agenda is very tight.

Industry day& Gala dinner

The second day of the congress was dedicated to the pharmaceutical companies. It is always interesting to learn how the industry sees the patient community, get insight intonew studies and discuss common projects.

The day was kicked-off by the common presentation of Bayer and MSD. Mikyung Changand Chandra Rao outlined their patientengagement initiatives. It was heartwarming to see their clear message on the slides: “Place Patients First”. They are thinking about a continuous learning curve: they invite patients to listen and learn from their experiences, get to know their needs, concerns and challenges they are facing. This information is used in solutions, which hopefully meet patient expectations. The next phase, which close the circle, is the feedback: collecting information from the patients how the talks are built in. And the process restarts. The presentation was not theoretical is it might look like, but covered lots of practicalities. It outlined the partnerships Bayer/MSD relies on and their commitment from drug development to better care of patients. We could learn about special programs on the field of medical education and patient supporting.

Acceleron, a relatively new player on the field of PH, gave a valuable insight into their company and the trials they are working on. We could welcome Jessica Barnes, Ameet Khara and Sujay Kango as presenters. It was interesting to seethe potential repurposing of currently existing drug(s) –the trend, which is currently followed on many areas of the rare disease field.The current treatments promote widening of blood vessels (dilation), however, as they understand, abnormal cell growth may also be a target for PAH treatments. Two animal modelshave already underpinned this approach, as theyshowed promising resultsin improving hemodynamics.

Actelion closed the industry day.Despite Actelion went through a lot of changes inthe past years as they became thepart of the Johnson and Johnson Family of Companies, they remainedone of our most important partners. Alessandro Maresta kicked-off the presentation and gave a patient advocacy update. More details about these projects were provided by Rajashree Dhamanaskar. The patient diary is undoubtedly a great success and used by hundreds of patients on a daily basis. To address the need of younger patients, Actelion developed the smart phone application versionofthe diary. It is easy to use and record different health-related and other relevant dataand the reminder functions are one of the most liked features. PAHuman, the online booklet, gives a comprehensive guide and provide useful information for patients on their whole patient journey in a very eye-catching way. The PAH Patient Charter and the Careers and hobbies campaign are also the ones, which need to be mentioned.

The day did not end with these presentations, because that evening was held thegreatly expected Gala Dinner.

But before everybody could enjoy the excellent foods, Prof. Nazzareno Galie made an excellent presentation about the advances in diagnosis and management of PH. In his very detailed lecture we could look back to decades and witness how the understanding, management and treatment strategies of the disease changed and evolved –in light of the symposia and the guidelines from 2004, 2009 and 2015.

The Gala Dinner is always about celebration: we celebrate the long journey which behind us and where we are now and the big accomplishments of the year.Colorful presentations reminded us of the great success of World PH Day and videos showed the pictures of thephoto contest and the highlights of the best events. We handed over the photo awardtoFundación Contra la Hipertensión Pulmonar, Spain. Big applause went to the awardees for the best World PH Day events: Bosnia and Herzegovina (3rdplace), Bulgaria –BSPPH (2ndplace) and Serbia (1stplace). These moments were so touching that some of us could not resist crying. The event ended with dancing in a very good mood.

Lectures

The Mondaymorningstarted early with the presentation of Prof. Simon Gibbs. Previous night-with the help of Prof. Galie-we looked back, this time we lookedat the future,what is ahead of us, what we want to achieve in the future. We learned about the future of imagingbiomarkers in the diagnosis, genetics, the planned use of artificial intelligence, digitalization, some potential new drugs (repurposing) and new devices and last, but not least the ways pediatricscan change in the future.

The session of lectures was concluded by Prof. Arsen Ristic, who focused on access, especially in the East European countries and outlined possible ways of collaboration to improve the situation. Patients in these countries are facing difficulties: there are unmet needs regarding early (and differential) diagnosis, access to expert centers and equipments and the lack of dedicated rehabilitation programs also make the patients’ life challenging.

Before the lunch we had time for a short wrap-up of advocacy activities presented by GergelyMeszaros. He introduced the number of projects we are participating in and gave a report of this year’s achievements.

The second part of the day continued with the presentation of Mirko Glavinic who unfolded the tips and hints of a successful social mediacampaign and gave valuable ideas how we can better use these channels.

The day ended with the capacity building workshop: we could not only listen to different lectures, but the member associations were very active and presented their own projects, which worked well in the past. We discussed the importance of training and listed the learning possibilities available for patients

The last day was even more interesting, when it came to future projects. Gergely moderated this more than 2 hours long discussion and we agreed on launching different working groups, our involvement in projects driven by other umbrella non-governmental organizations and talked a lot about webpage update. Lots of questions and comments were raised and everybody could contribute to the discussion.

The conference ended with a light lunch and the delegates left to the airport during early afternoon hopefully with lots of plans in their head.

Thegeneral atmosphereof the congress was excellent, but please also visitthe quote section with the feelings of the members!

I am thrilled about and looking forward to our next conference!

Find more information and additional images in the Mariposa Journal Winter 2019.

Gergely Meszaros