Dear PHA Europe members, supporters, friends and family members!

Let me welcome you to the pages of our newest edition of Mariposa: you can learn more about this year’s World Pulmonary Hypertension Day (WPHD).
WPHD has a long history of celebration: in the first year, in 2012 a conference was organized in Madrid.We have been organizing these series of events for the 7th consecutive year and thought we can build on the experiences we gained from the previous years. …but suddenly, in the middle of the preparation for this year’s activity, on Wednesday, the 10th of March, the World Health Organization declared the COVID-19 outbreak a pandemic. It changed not only the planning and implementation of the projects, but our whole lives.Most of the European countries introduced various measures sooner or later: borders were closed, workplaces, if possible, and schools went online, except for agricultural sector and strategically important industries, production was suspended and, in some countries, citizens were not allowed to leave their homes without profound reasoning. Sport events and public gatherings, our usual partners in WPHD activities and fields of work, were either cancelled or postponed.

Amid these challenging and unprecedented circumstances, the difficult decision as to the next steps needed to be made. There were a lot of possibilities which included postponing the events to organize them as they were in the past; and the conditions were constantly changing country by country and day by day.Finally, we were brave enough and ran a series of online activities!

• O2kids video – the video which shows the isolation of children with PH and how you can help – was re-launched in our member countries with 22 (!) local language subtitles. This video is a good example of how PH is usually overlooked and misunderstood. The little kid in the video cannot play with his friends… Does it turn into a happy end? You can find the English version of the video at: youtube link: www.youtube.com/watch?v=ixL9cj58bfU&t=10s
  
  
• Webinar on access to treatment: Achievements and future plans. It is challenging to find a good subject which most of our members are interested in: it should not be too specific and neither too general. This year we walked around the theme of access with the help of Dr. Stanimir Hasurdjiev, Secretary-General of PACT (Patient Access Partnership) and CEE4. You can learn more about the webinar on the coming pages.
• Photo contest continues to be one of the best awareness raising tools. Each year we introduce some twist. This time two contests were running parallel: a group of professional photographers voted on the best photo and, simultaneously, everybody could vote and choose the best photos by using the “like” button under the pictures on Facebook. Do you think the same photo was the winner of both contests? You can find it out by visiting the following pages of the journal.

Our members were even more creative this year! Let me name a few without the aim of providing a complete list. Latvia and Spain (HPE) created their own informational videos and disseminated them on their social media platform. Ukraine (PHURDA) made TV interviews. Austria, Bulgaria (BSPPH) and Czech Republic light-painted their notable buildings on the 5th of May to raise awareness of PH. Among others Hungary, Lithuania, Slovakia and Slovenia posted runners and sportswomen/sportsmen wearing our “Get Breathless for PH” t-shirts. Ukraine (PHA) made a silent crowd of puppets. Croatia and Israel involved animals to maximize the “cute” factor. You can find many more exciting examples how our members have overcome the difficulties COVID-19 caused and despite these obstacles celebrated WPHD.

In addition to these activities the social media platforms were extremely busy and a lot of informational and eye-catching posts were made both by member associations and PHA Europe. Hundreds of photos were taken, posted and shared. A big applause goes to our members, patients, carers, friends and family members whose hard work and effort made this year’s WPHD celebration happen! We can be very happy with and proud of our achievements!

Let me conclude with our appreciation to our medical partners, physicians, surgeons and researchers, who participated in the WPHD events. Without their dedication we would not be where we are now. We also warmly thank our industry partners, who make our work possible and support our projects.
Looking forward to next years’ WPHD celebration and collaboration!

You can learn more about the series of online WPHD events in this edition of Mariposa: PHAE – Mariposa Journal (2020 Summer N.24)