Ever since the first World Pulmonary Hypertension Day (WPHD) on 5 May 2012, our important annual milestone has been used to combine and highlight our international efforts to raise awareness of, and support for, patients with PH. This year it was clear that WPHD has grown into a spectacular celebration of our community’s work, and we reached more people with our campaigns than ever before. As in previous years, the PHA Europe WPHD 2017 theme was “Get breathless for PH”. Healthy people were encouraged to take part in high-energy sports and activities to get breathless, demonstrating their solidarity with people with PH who struggle to breathe. Part of our mission is to continue to highlight that patients with PH often endure life-changing physical limitations every day.
This year, 35 associations from 30 countries took part in WPHD across Europe, with many more worldwide. It is always amazing to see the creativity of the events organised by the different patient associations for WPHD, and 2017 was no different in this regard. As a result of the great work of our member associations, in Europe alone, over 1 million people attended a total of 58 events, which generated an impressive 425 pieces of media coverage: 16 press agencies, 61 print articles, 225 online media, 77 TV clips and 37 radio announcements, reaching millions of people across Europe. Innovative sporting events ranged from American football training in Poland to indoor climbing in Bulgaria, involving a wide variety of celebrities, sporting legends, experts and journalists to support and publicise the events (almost 200 in total). For the first time, Portugal was supported by famous athletes, who helped to promote the WPHD events through their own social media channels, resulting in the best attended event they have ever held for WPHD. Ukraine’s PH Urda invited influential doctors, lawyers and patients to a roundtable event to discuss organ donation in Ukraine. Creative awareness campaigns engaged a younger audience with a break dance battle and BMX cycle show in Belarus and recording of a dance video in Spain. Astonishing feats of physical endurance were undertaken by extraordinary individuals this year. Marina Lazic and Jovica Spajic of Serbia pushed themselves to the physical limit in the Sahara Race, the hardest ultra marathon in the world, with Jovica placing first in her age category. One of our Cypriot patient association members joined 10 fellow lung transplant patients and their medical teams, to climb to the top of the Kilimanjaro (5.895 m) as part of a scientific expedition, organised by the Vienna Lung Transplant Centre. Their intention was to show the level of fitness and quality-of-life they had regained as a result of their transplants. Climbers from Bosnia and Herzegovina reached the top of Muztagh Ata, 7.546 m, in China, flying the WPHD flag, to show their solidarity with PH patients. Read more about WPHD 2017 in the Summer edition of our Mariposa Journal at Mariposa News Summer 2017 (PDF).
Getting ready for World PH Day 2017
With just one month to go to May 5 and building on everyone’s amazing effort and success last year, we have some exciting new plans to generate even more noise around WPHD 2017 this year.
The WPHD 2017 theme will be, as in past years, around sports and high energy activities, with the slogan “GET BREATHLESS FOR PH”. The idea is that people who are healthy conduct high energy activities which make them breathless, in solidarity for patients, who struggle to breathe. This also serves to highlight the physical limitations patients experience in their daily lives.
Our very comprehensive media toolkit, developed to support the associations in preparing for their events with tips and guidance as well as artwork and visuals, is available at this link.
Here is an update on our WPHD activities:
Thunderclap: this year’s campaign has been set up together with PHA USA and the PH Latin Society. Last year we managed to have (PHA Europe and the Latin Society working separately) over 3 million reach, this year we can potentially have even greater numbers! Join here, we count on your support!
Facebook page: a dedicated WPHD Facebook page has been created and it will be administered jointly by PHA Europe, PHA USA and the PH Latin Society. This will serve as a common platform to post photos of WPHD events around the world. If you have not yet “liked” it, here is the link: https://www.facebook.com/worldphday/
WPHD website: this has been completely restyled by the PHA and is looking great. It will be also be administered jointly by PHA Europe, PHA USA and the PH Latin Society www.worldphday.org
Global Wave: PHA Europe, PHA USA and the PH latin Society have also agreed to promote together a new initiative called the “Global Wave”, where we will be collecting photos of people holding their hands up in the shape of a butterfly (to symbolise the lungs, as in our logo). Make sure to add the hashtag #GlobalWave4PH
WPHD app: Steve Wormer from phaware.com has designed a great new app which has been launched together with PHA Europe to post selfies, add WPHD stickers and share on social media! The app is available free from App Store and Google Play http://www.phaware.global/phaware365
More news on all these new initiatives soon!
In 2016 more countries than ever participated in World Pulmonary Hypertension Day (WPHD), with each patient association hosting inspiring events to show their support for patients around the world. 30 European PH patient associations held ‘Get Breathless for PH’ and #BreathofSuccess activities this year! The innovative events ranged from a Viking Splash Bus tour around Dublin to an international backwards sporting event in Oslo. To help us raise awareness and fly the flag for PH patients around the world, our member associations enlisted the support of world famous figures from the participating countries. In Bulgaria alone, we were lucky enough to have soprano Christina Angelakova as well as the Minister of Health Petar Moskov and the Minister for Sports Krasen Kralev.
To help the patient associations share their message of hope, we developed ‘Get Breathless for PH’ and #BreathofSuccess customizable e-postcards and made them available to download from the PHA Europe website. Over 200 people downloaded the e-postcards, to raise awareness of PH in their own countries.
For the first time ever, we launched two Thunderclap social media campaigns on 5th May: one sharing a message globally from PHA Europe and the second coming from the Latin American PH Society. An amazing 457 supporters signed up to send out a coordinated WPHD message in Europe, which read: “I am supporting #WPHD May 5 to show solidarity with pulmonary hypertension patients who struggle to breathe”. This message achieved a social reach of 533.069 people. A further 500 people supported the WPHD Latin American PH Society Thunderclap, which reached an amazing 2.473.423 people. In total, these inspirational messages reached over 3 million people around the world, a fantastic result!
This year, PHA Europe took its first step into digital communication, by speaking to the PH audience via Facebook. We were able to identify those who were already having conversations about PH and provide them with more information on how they could be part of WPHD. Over 4 million people saw our adverts, which encouraged over 35.000 people to visit the pages of local patient associations to learn more about our activities.
As a result of the great work of our member associations, so far, in Europe alone, we have generated an impressive 218 press and online articles, 106 TV broadcasts and 20 radio broadcasts, across 23 countries. The PHA Europe website saw a high rise in engagement between April and July, including over 6.000 people visiting the website for more information and over 7.000 visits to the ‘What is CTEPH’ page after viewing the PHA Europe Facebook page on their mobile. The PHA Europe Facebook page saw even better results, with the Facebook content reaching over half a million people and over 5.000 people liking, sharing or commenting on the WPHD posts. As a result, the PHA Europe Facebook page now has an impressive 8.809 likes – a great result.
WPHD activities also took place in Australia, Asia, North and South America, so that in total 47 patient associations across all continents contributed to spreading awareness!
A very big thank you to all those who helped make this WPHD the most successful yet.
World PH Day 2015
This year the international pulmonary hypertension community joined forces again for the 4th edition of the World Pulmonary Hypertension Day (WPHD) celebrations.
Twenty five countries in Europe united together with the slogan to “Get Breathless for PH” for WPHD, with each country putting their own unique twist on events, ranging from Irish dancing from our Gaelic friends in Ireland to the breathtaking feat of climbing the snowy peaks of Rysy Mountain by members and supporters of the Czech and Slovakian associations. WPHD activities took place in many other countries across the globe including Australia, Canada, China, Latin America, the Middle East and the U.S.A – meaning PH awareness was spread across 45 countries in five continents!
Celebrities and infuential public figures join the cause
Through our joint efforts, a little known condition, PH, is increasingly being made known across the world. More and more celebrity endorsers and influential public figures are joining our cause, including political leaders and health ministers, sporting heroes such as The World’s Strongest Man, Franz Müllner, Olympic Gold Medal swimmer Federica Pellegrini, World Champion free diver, Goran Colak, as well as the world-known Riverdance group, rock bands “Beni and Non Stop” and “Neverland” and singing sensation Iván Gardesa. These are only a handful of the big names that pledged their support and proudly stand in solidarity with PH patients – it’s incredible to see them sharing in our successes and raising the profile of PH.
Raising awareness of different forms of pulmonary hypertension
This year in Europe, in addition to the activities conducted around the “Get breathless for PH” theme, we also introduced the #BreathofSuccess initiative to the campaign, an educational, story-sharing activity that aims to increase understanding of chronic thromboembolic pulmonary hypertension (CTEPH), the only type of PH to have potentially curative surgery without having to resort to lung transplant. One of the highlights of the #BreathofSuccess campaign was the inspirational film of Gabriele, who underwent successful thromboendarterectomy surgery for CTEPH. His account of the severe limitations with the disease prior to surgery, to post surgery and being able to play and coach the sport he loves again was truly touching to watch (see CTEPH section of the website). #BreathofSuccess continues throughout the year and we hope to see many more positive stories being shared!
Great social media and media outreach
This year again the media played a vital role in accelerating the reach of WPHD. Due to all of the amazing work of the national associations and newsworthy activities, in Europe alone we generated around 500 press/online articles, and almost 100 TV/radio broadcasts! Social media also proved a great platform to drive momentum and help us to spread our messages even further. The PHA Europe Facebook and Twitter pages received a huge surge in page visits and “likes” throughout the campaign indicating increased levels of engagement.
For the second time in the history of WPHD, we launched our “Thunderclap” online social media campaign: 158 people signed up to send out a coordinated message from their Facebook, Twitter and Tumblr channels on May 5, garnering a social reach of 139.694 people – a rise from last year! Over 2.125 uses of the #WorldPHDay and #BreathofSuccess hashtags ensured that PH featured prominently in the online health and public policy conversation.
Partnering with IRONMAN for WPHD in Frankfurt
More success came in the form of our collaboration with the Ironman European Tour, as it proved once again to be a powerful outreach initiative. As the Official Charity Partner of the Ironman European Championship in Frankfurt our presence at the race exposed our message to thousands of spectators and our articles in the official Ironman newsletters ensured thousands more found out about PH. Six brave athletes took part in the grueling triathlon proudly wearing our branded race suits on behalf of PHA Europe and thousands “rang the bell” under the “Get breathless for PH” branded arch on a hot spot of the race course to raise money for the local German PH association – pulmonale hypertonie e.v.
Check out the Summer 2015 edition of our Mariposa Journal for further details and photos!
A full report of WPHD activites around the world is featured in the Summer 2015 edition of the Mariposa Journal.
More WPHD and IRONMAN photos at:
A very big thank you to each and every one of the PH associations who celebrated WPHD for the remarkable contribution and perseverance in their pursuit for improved treatment and care for those living with PH. A very big thank you also to our industry partners, whose partnership and dedication to WPHD has allowed us to grow from strength to strength every year.