jueves, 16 de abril de 2015

World Pulmonary Hypertension Day - PHA Europe ► Día Mundial de la Hipertensión Pulmonar, 5 de mayo 2015

World Pulmonary Hypertension Day - PHA Europe

PHA Europe

Días, Semanas y Meses Específicos de Enfermedades Raras
Día Mundial de la Hipertensión Pulmonar, 5 de mayo 2015

World PH Day 2015

Global campaign

With just under one month to go to World PH Day 2015, PHA Europe’s member associations are busy organizing their national events. The overarching theme is again sports, with the “Get breathless for PH” slogan.
About 20 countries will be taking part in the World PH Day celebrations and these are just some of the activities which will take place on or around May 5:
  • dance flash mob (Republic of Macedonia)
  • cycling tour (Hungary and Spain)
  • marathon (Belgium, Italy, Slovenia and Ukraine)
  • yoga (Belarus)
  • climbing a historical monument (Latvia)
  • public stair climbing event (Bulgaria BSPPH and Portugal)
  • climbing the Tatra mountains (joint Czech Republic and Slovakia project)
  • volleyball (Italy)
  • public exercise training event (Poland)
  • regatta and other sports activities (Portugal)
  • soccer match (Switzerland)
  • football match (Belgium)
  • blue lips flash mob (Bulgaria PHA)
  • blowing out candles (online campaign) (France)
  • traditional dancing exibition (Ireland)
  • gym activities on top of the Prater ferris wheel (Austria)
  • art contest on the theme of “breath” followed by an auction (Lithuania)
A detailed summary of the national events, country by country, will follow shortly.
In this year’s campaign we are raising awareness of the five different types of PH, each of which has a complex story behind it.
In particular, we have introduced an additional feature to highlight chronic thromboembolic pulmonary hypertension (known as “CTEPH”), which is the only type of PH which is potentially curable without the need to resort to lung transplantation. The potential cure for CTEPH is a surgery called pulmonary endarterectomy (PEA). The#BreathofSuccess campaignforms part of the wider World PH Day and “Get Breathless for PH” initiative to support the cause. It aims to inspire the PH community with positive stories of everyday successes achieved by people with CTEPH. A successful surgery is the ultimate success story for a person with this disease. However all achievements, no matter how small, should be celebrated!
By uniting together and sharing success stories for WPHD, we can continue to strive for early and accurate diagnosis, optimal treatment and additional research into all the types of PH.
Help us to raise awareness of PH and inspire the PH community by joining our Thunderclap.
Let’s make a “Thunderous” noise on May 5 to raise awareness of this little-known rare disease!

Ironman 2015

PHA Europe will be Official Charity Partner at IRONMAN Frankfurt on July 5 . This will be our third year of collaboration with the IRONMAN European Tour! PHA Europe will be actively present in Frankfurt with a stand and many interactive activities. More news to follow soon!

World PH Day 2014

Video Player
Thanks to the continued support of the PHA Europe member associations, their friends and supporters and to their hard work and dedication to raising awareness of PH, the results of the 2014 campaign surpassed our dreams and expectations, with an exciting array of flashmobs, sporting events and social media activities taking place all over the world and putting PH firmly on the map. Health Ministers, local authorities, athletes, yo-yo champions, physicians, celebrity sports reporters, professional high jumpers and basketball teams, musicians, synchronized ice skaters, celebrity singer Michael Buble and even Justin Timberlake – to name but a few – were among the thousands of people that came together to mark WPHD, putting their names next to ours as supporters of this important cause.
In Europe 20 countries joined forces and “got breathless for PH” – from a balloon flashmob in Tel Aviv to a sporting extravaganza in the historical square of Prague and a marathon through the woods and hills of Tivoli, in the city streets and rural suburbs and cascaded our message from the mountain tops. WPHD activities also took place in 12 Latin American countries, Australia, Canada, China, Ghana, Indonesia, Oman, South Africa, and the U.S. – meaning a total of 40 countries rallied together, building on the 30 that united together last year.
The campaign was reported by the media worldwide, with more than 150 press articles, 20 TV clips and 25 radio announcements generated to date and over 2,200 uses of the #WorldPHDay hashtag. This year we also launched the first ever World PH Day Thunderclap – a social media flashmob – for which 314 people signed up to send out a coordinated WPHD message from their social media channels on 5 May, with a social reach of 124,000 people. This proved to be a fantastic way of driving momentum and awareness for the campaign on WPHD itself.
For further details and photos of the 2014 WPHD celebrations see:


Momentum of another kind was generated by the IRONMAN athletes who “got breathless” as part of WPHD celebrations by participating in Europe’s toughest triathlon in support of PH patients. For the second year running, we are proud to be the only official charity partner of the IRONMAN European Tour with a strong presence at the races, with a total of 60 athletes running for PH in Mallorca, Klagenfurt, Nice, Frankfurt, Copenhagen, Zurich and Budapest.
See section on Ironman.

“How it all began”

The first World Pulmonary Hypertension Day (WPHD) was celebrated in Madrid on the 5th of May 2012. This date marked a very important milestone for the PH community worldwide. WPHD received the endorsement of PH associations from five continents, of patient organizations related to PH (eg. scleroderma) as well as rare disease federations (EURORDIS, ORPHANET, NORD) and scientific societies and organizations worldwide (including the European Respiratory Society, the American Thoracic Society, the European Lung Foundation).
The event had an outstanding scientific programme and a very prestigious panel of speakers. All the activities were lead and organized by the Spanish Pulmonary Hypertension Association – ANHP – in the course of many months of hard work on a national and international basis. The Official Opening Ceremony on the 5th of May featured presentations from some of the most distinguished international experts in the pulmonary hypertension field. who offered a summary of the main historical and scientific developments in this field. The scientific speakers were introduced by the Leaders of the main world PH patient association. The scientific symposium was declared of “National Health Interest” by the Spanish Ministry of Health, Social Services and Equity and by the Latin Entralgo Agency and was inaugurated by Dona Mercedes Vinuesa, Director General of Public Health, Quality and Innovation.
May 5 was originally chosen as WPHD because it is the anniversary of the first child’s death in Spain from pulmonary hypertension as a result of toxic rapeseed oil more than 30 years ago.
PHA Europe in its 2013 and 2014 celebrations for WPHD chose to use a a common theme and slogan for its activities. Harnessing the universal intercultural appeal of sport, people around the globe wishing to help those living with PH were encouraged to take part in sporting activities to “get breathless.” It was felt that this powerful way of highlighting the restrictions on physical activity faced by PH patients could help to raise wider awareness of PH and bring to the forefront the challenges these patients face. Both the 2013 and 2014 campaigns were a resounding success both in terms of participation of the associations and of media outreach.

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