World Pulmonary Hypertension Day 2019

World Pulmonary Hypertension Day 2019

The first WPHD was organized in Madrid on 5 of May, 2012 and we are happy that since then we have managed to organize our “breathtaking” series of events in each year under the theme of “Get Breathless for PH”. The idea behind this concept is to help the whole society in understanding the everyday life of PH patients: how they manage with the challenges of their condition and what they are really feel- ing during even a simple activity like ironing or climbing the stairs. Such feeling is very similar to the one man can feel during sports: minutes or even longer periods of time of stalemates, when no more step is possible to make, when your body does not obey due to shortness of breath. Thanks to the continuous support, dedication and hard work this year was again a big success with a great variety of events, which raised the awareness of pulmonary hypertension not only in Europe, but well beyond, all over the world. Activities were organized in the USA and Latin America, in Canada and Australia. From Europe 20 countries and 24 member patient associations joined the project: organized and participated in different sport events, held educational programs, gave TV and radio interviews.

We could witness hundreds of kilometer long bike rides, inside the gyms and outside on the roads, through multiple countries and continents (!), various trail running contests crossing hills and forests, running contests in very nice historical urban areas. Somebody was brave enough to swim amongst sharks, but wearing our branded T-shirt. Others took the challenge and climbed high mountains. There were dancings, which moved all parts of the body, horse riding, cheerleading master class and many more activities. Lots of children were involved in different activities: their drawings and poems were collected in a booklet, they participated in running contests and they have just laughed, played and had very nice time in our colors, wearing our “Get Breathless for PH” T-shirts. In some countries sport events were supplemented with important meetings with stakeholders and conferences.

This year we intro- duced new initiatives and fine-tuned what already worked in the past with great success. Unfortunately we could not rely on Thunderclap, a tool which sent coordinated messages on different social media platforms, but managed to get the most from our social media platforms. Regular posts about member associations’ activities, thematic educational articles about the disease, the treatment and classification, just to name a few, which helped us to get even more engagement than last years. We composed two infographics: the first one is dealing with the facts and data of the condition. It contains 3 references to the underlying scientific literature and provides a short insight of the disease. The second one is approaching the disease from a practical point of view: how the life can be managed with the disease and what type of assistance the patients can look for. We have included some of the key points and considerations from the result of the ‘International Patient and Carer Survey”. The infographics have reached more than 5.000 users and we are expecting more and more as we are progressing with the translations. Initially, they were drafted in English, but have been already translated into 10 more languages. However, these infographics were published as part of the WPHD celebration, our plan is to use them later on as well, during discussions with other stakeholders. They are very colorful and eye-catching, easy to understand and may give a basic understanding of the disease, so they help An educational part was integrated into this year’s events. Scientific lectures have become integral parts of the WPHD celebrations. Many member associations held them as part of their event or separately as a standalone program. They managed to address passers-by and spread high level, reliable and up-to-date information about the disease with the help of local PH experts, who actively participate in these programs.

A webinar with special focus on CTEPH (chronic-thromboembolic pulmonary hypertension) and ERN-Lung (European Reference Network for rare respiratory diseases) was organized centrally and you can learn more about it from the present edition of the Mariposa. The photo contest evolved to an unmissable part of contents the World PH Day celebration, however, we made a twist this year and organized it on an online platform. Last year a jury of medical experts made the final decision, this year it was up to the wide community, everybody could vote. This move generated more noise around this initiative, more interaction and engagement and became a real awareness raising tool with more than 4.000 votes. We had extended goals this year. On top of increasing the awareness of the disease, we aimed to ensure the engagement of relevant stakeholders and boost social media reach. We think the following numbers are self-explanatory and show we definitely exceeded our expectations: 50 events, more than 276,000 participants, 80 experts and celebrities, 291 pieces of media coverage and fabulous online numbers with more than 115,000 people reached and more than 12,000 likes solely on the Facebook page of PHA Europe. Hopefully next year will be even more successful and colorful!

PHAE – Mariposa Journal (2019 Summer N.22)

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