Wilhelmstraße 19 • 1120 Vienna • AUSTRIA • +43 1 4023725 • +43 1 4093528 • info@phaeurope.org • www.phaeurope.org

SUMMER 2014 • PHA EUROPE’S OFFICIAL JOURNAL • N. 12

MariposaJournalP U L M O N A R Y H Y P E R T E N S I O N

“GETTING BREATHLESS FOR PH” CAMPAIGNS FOR WORLD PH DAY 2014!

to over 100,000 recipients. Outside of Europe, PH awarenessactivities also took place at the IRONMAN Australia and SouthAfrica races. All of these inspiring activities were supported by our updatedWorld PH Day toolkit, which included guidance on how toorganize flashmobs, social media know-how and a wealth of“Get Breathless for PH” branded materials which were pro-duced and used all around the world - as you will see in thefantastic photos in the following pages.These results have demonstrated the strength of the uniqueand fruitful collaboration between us, Actelion, BayerHealthcare and the IRONMAN European Tour which leveragesour unique network of patient groups, the media expertise ofActelion and Bayer Healthcare and the reputation of aglobally renowned sporting platform to really capture thehearts and minds of the public. This collaboration was alsoshortlisted for an “Excellence in Healthcare Collaborationsand Partnerships” award at Communique this summer - a pres-tigious communications awards event.Speaking of awards, we are also delighted that World PH Daywon the “Global PR Breakthrough of the Year award” at theGlobal PR Week Awards in May 2014. This is testament toyour hard work and dedication and we would like to take thisopportunity to thank everyone involved in making World PHDay the successful global campaign that has rightly come tobe known as.As a final thought, in the spirit of us joining together toraise awareness of PH for World PH Day, I leave you with the

words of poet Mattie Stepanek, who wrote for peace and onbehalf of people with disabilities and children with life-threatening conditions:“Unity is strength... when there is teamwork and collaboration,wonderful things can be achieved”.

Gerald FischerPHA Europe President

WPHD photos at:https://www.facebook.com/pages/Pulmonary-Hypertension-Association-Europe/141060385915366

Austria

Belgium

Bulgaria

Czech Republic

France

Germany

Greece

Hungary

Israel

Italy

Latvia

Netherlands

Norway

Poland

Portugal

Turkey

Turkey

Russia

Slovakia

TurkeySlovenia

Spain

Sweden

Switzerland

Turkey

Dear members, supporters, friends and families, a very warm welcome to this special summer editionof the Mariposa journal which focuses on telling thestory and celebrating the success of this year’s “GetBreathless for Pulmonary Hypertension” activitiesto mark World Pulmonary Hypertension Day.Thanks to your continued support, hard work anddedication to raising awareness of PH, the resultsof this year’s campaign have surpassed our dreamsand expectations; with an exciting array offlashmobs, sporting events and social media activ-ities taking place all over the world and putting PHfirmly on the map.Health Ministers, IRONMAN athletes, yo-yo cham-pions, physicians, celebrity sports reporters, profes-sional high jumpers and basketball teams, musi-cians, synchronized ice skaters, celebrity singerMichael Buble and even Justin Timberlake - toname but a few - were among the thousands ofpeople that came together to mark World PH Daythis year, putting their names next to yours as sup-porters of this important cause that means so muchto us all.This year, 20 European countries joined forces to“Get Breathless for PH” - from a balloon flashmobin Tel Aviv to a sporting extravaganza in the his-torical square of Prague and a marathon through thewoods and hills of Tivoli - we got breathless andraised awareness of PH in the city streets and ruralsuburbs and cascaded our message from themountain tops. World PH Day activities also took

place in 12 Latin American countries, Australia,Canada, China, Ghana, Indonesia, Oman, SouthAfrica, and the U.S. - meaning a total of 40 coun-tries rallied together to raise awareness for WorldPH Day 2014, building on the 30 that unitedtogether last year.The campaign was reported by the mediaworldwide, with more than 150 press articles, 20 TVclips and 25 radio announcements generated to dateand over 2,200 uses of the #WorldPHDay hashtag.This year we also launched the first ever World PHDay Thunderclap - a social media flashmob - forwhich 314 people signed up to send out a coordi-nated World PH Day message from their socialmedia channels on 5 May, with a social reach of124,000 people. This proved to be a fantastic wayof driving momentum and awareness for the cam-paign on World PH Day itself.Momentum of another kind was generated by theIRONMAN athletes who “got breathless” by partic-ipating in Europe’s toughest triathlon in support ofPH patients. For the second year running, we areproud to be the only official charity partner of theIRONMAN European Tour and we have already hada strong presence at the races, with a total of 59 ath-letes running for PH in Spain, Klagenfurt, Nice,Frankfurt and Zurich and with upcoming presenceat the last of our sponsored races in Copenhagen.Through these races, our message has reached upto a potential 1 million attendees and our articlesin the IRONMAN newsletters have been distributed

Editor’s memoSummer 2014 edition

Austria

Belgium

Bulgaria

Czech Republic

Finland

France

Germany

Greece

Hungary

Ireland

Israel

Italy

Latvia

Netherlands

Norway

Turkey

Turkey

Poland

Portugal

TurkeyRepublic of Macedonia

Russia

Slovakia

Slovenia

Spain

Sweden

Switzerland

Turkey

Ukraine

• World PH Day 2014 Europe - National events

- AUSTRIA p. 4

- BELGIUM p. 6

- BULGARIA BSPPH p. 8

- PHA BULGARIA p. 10

- CZECH REPUBLIC p. 12

- FINLAND p. 14

- GERMANY p. 16

- GREECE p. 18

- HUNGARY p. 20

- ISRAEL p. 22

- ITALY p. 24

- LATVIA p. 26

- POLAND p. 28

- PORTUGAL p. 30

- REPUBLIC OF MACEDONIA p. 32

- SLOVAKIA p. 34

- SLOVENIA p. 36

- SPAIN p. 38

- UKRAINE p. 40

- FRANCE p. 42

- TURKEY p. 43

• World PH Day 2014 Europe - IRONMAN p. 44

• Media clippings p. 48

• World PH Day 2014 - Rest of the world

- AUSTRALIA p. 52

- CHINA p. 53

- GHANA p. 53

- LATIN AMERICA p. 54

- USA p. 55

• Upcoming events 2014 p. 56

• What is Pulmonary Hypertension? p. 57

• Members of PHA Europe and contact details p. 58

CONTENTS

54

Flying highA flashmob was organized in the Vienna Prater incollaboration with the Austrian Kite Society. Hugekites with the “Get Breathless for PH” logo wereflown over the Prater to raise awareness of PH. PHpatients and their families, all wearing the “GetBreathless for PH” t-shirts, were invited to attendthe event which drew in a big crowd.

Medal of honourOn April 23rd I had the honour of being awardedthe Golden Medal of Honor (the Goldenes Verdi-enstkreuz fuer Verdienste um die Republik Österreich)for special achievements of the Republic of Austriafrom the Austrian President Heinz Fischer. Thefestive celebration took place in the Chancellerybuilding ceremonial hall. The medal was handedto me by the Austrian minister of Health AloisStoeger for my work for PHA AUSTRIA, PHAEUROPE and for being an active part in writing thenational Austrian action plan for rare diseases.Press, TV stations and of course my family werepresent.

Hope springs eternalMy daughter Maleen’s book has been launched inAustria, with an exceptionally huge mediaattention (Maleen is a PH patient on IVprostanoids since she was four years old). It was thebiggest awareness event in Austria for PH in thepast 15 years. Thanks to our industry sponsors,who offered an additional budget, Maleen’s bookwas translated into English and will be available byend of August. The sales price includes a 5$ couponthat can be given by the buyer to a patient associ-ation of his choice. 346 Patient Groups from aroundthe world are listed in the book with their contactdetails. Every one of these 346 PH groups willreceive a free sample of the book with a letterfrom PHAE. The profit of this edition of Maleen’sbook will be donated to PHAE. We are hoping thatMaleen’s story will give hope and positive supportto the whole PH family around the world.

Gerald FischerSelbsthilfegruppe Lungenhochdruck

www.lungenhochdruck.atwww.facebook.com/pages/Lungenhochdruck-

Austria/141174239237050

WORLD PH DAY 2014 - AUSTRIA

“HOPE SPRINGS ETERNAL” STEALS

THE LIMELIGHT IN AUSTRIA

Maleen with Justin Timberlake

76

Getting active for PHOn 5 May, we joined staff at Bayer to take part inan event to “Get Breathless for PH” by walking ontreadmills to raise money for the patient organi-zation. Noémi, aged 13, and Charlotte (who recentlyunderwent a transplant), aged 15, both have PH andtalked to the staff about living with the condition.Chairman Hendrik Ramaker and Prof. Marion Del-croix also talked at the event - attended by over 100people - to mark World PH Day.

Virtual action on Facebook and TwitterA virtual campaign was launched on 5 May. Theidea was to run, cycle or walk for PH by posting youractivity on Facebook and Twitter using the hashtag#phbelgium @phbelgium. This campaign is stillrunning so we hope to keep up the involvement andexcitement!

Feeling blue? Blue Lips Campaign ralliessupport for people with PHAmonth long Blue Lips Campaign saw schoolchildren, families, celebrities and even politiciansgetting involved in raising awareness of PH. Sup-porters painted their lips blue in solidarity with

patients and took pictures of themselves, causing aviral senstation when posted on social media. So far250 photo postcards have been collected and thenumber keeps growing!

Mid-summer night run in Ghent The “Get Breathless for PH” activities culminatedon 21 June, when over 5,000 runners participatedin a 10km run in the city of Ghent. 30 of these ath-letes ran especially for our PH association to raiseawareness of this devastating condition.

Media coverageA number of online media covered our campaign forWorld PH day, including PassionSanté.be, l’avenir.net,topicsanté.be and Knack.be. A radio interview forRadio 2 and an article in the Gazet van Antwerpen, the3rd biggest newspaper in Flanders, and biggest news-paper in the region of Antwerp, are planned in thecoming month.

Hendrik RamakerPatiëntenvereniging Pulmonale Hypertensie vzw

www.ph-vzw.bewww.facebook.com/PHBelgium?fref=ts

WORLD PH DAY 2014 - BELGIUM

GETTING ACTIVE FOR PH IN BELGIUM

Prof. Marion Delcroix (center) with Noémi and Charlotte

98

Series of events celebrate WPH Day in SofiaThis year Bulgaria celebrated World PulmonaryHypertension Day on 17 May with a mass “Marchof Hope”. A great number of supporters took on thethree-hour steep trail in the Vitosha Mountainsnear Sofia, climbing 1,367 meters to show theirsupport for the patients with PH.The “March of Hope” was an effective metaphor forthe condition of patients with PH and through thiswalk with nature it revealed to participants what itmeans to be constantly breathless, one of the mostrecognizable symptoms of the condition. Alongside the “March of Hope”, personal video mes-sages by famous Bulgarian influencers, includingbloggers, professors, singers and activists were pub-lished. Specially designed information materials - flyersand brochures, posters, demonstration of yo-yo skillsand a collection of blue palm prints - were distributed,another symbolic act of solidarity with PH patients. For the second consecutive year the campaign washeld under the patronage of the Sofia Mayor - Mr.Yordanka Fandakova. More than 4,000 people wereengaged in the activities around the campaign andreceived informative materials about PH.The campaign received significant media exposureand was covered by more than 15 national and spe-cialized media publications. Facebook engagementand personal video messages from the endorsers ofthe “March of Hope” reached 58,000 views. “We really want to thank all those people who literallylost their breath in the “March of Hope” and did thisentire mountain route to support us. For us this meansa lot”, said Mrs. Natalia Maeva, Chairwoman of theBulgarian society of patients with PH.

“Get breathless for PH” 2013 campaign winsprestigious awardThe 2013 “Get breathless for PH” campaign sup-porting was awarded with 3rd prize in the category“CSR projects for NGOs” at the oldest and most rep-utable contest in the field of Public Relations in Bul-garia - the PR Prize 2014, organized by the Bul-garian Society for Public Relations. The BSPPHcampaign is one of 48 projects which competed inthe 14th edition of this contest. “It was reallyrewarding to work on the campaign and we arepushing to make it better each year. We are veryhappy with the award. A special thanks to all teamof CIVITAS GLOBAL BULGARIA” said Natalia Maeva,President of BSPPH. The good news about the

award was covered in the media landscape, in Bul-garia On air TV chanel, Darik Radio and as well asin different online portals.

Young Bulgarian Yo-Yo player supports "GetBreathless for PH"In the autumn of 2013, when the national yo-yocontest was held, many players, including the twotime National Champion, Konstantin Tudjarov,supported BSPPH, dedicating their wins to the “GetBreathless for PH” campaign. The city of Budapest,Hungary, hosted the European yo-yo championships.The masters of yo-yoing from all over Europe demon-strated various tricks which were hugely impressive.The 2013 Bulgarian National Champion Kon-stantin Tudjarov was a relatively fresh face in thetop ranks of the competition but that didn’t stophim from defeating the former World Champion,and taking 4th place in the biggest yo-yo event inEurope. George Stoyanov, also a NationalChampion yo-yoed his way throughout the cham-pionships in support of PH. This year in earlyAugust, for the first time in history, the WorldYo-Yo Contest will be held in Europe - Prague tobe exact. We expect our boys to reach the topspots! We’d like to thank the young players whodedicated their participation in this prestigiouscompetition to our PH campaign. Thank you!

Natalia Maeva, Bulgarian Society of Patients with Pulmonary Hypertension - BSPPH

www.bspph.netwww.facebook.com/BSPPH.Bulgaria?ref=hl

WORLD PH DAY 2014 - BULGARIA BSPPH

“MARCH OF HOPE” SUPPORTSPATIENTS WITH PH IN BULGARIA

1110

On May 7, pulmonary hypertension (PH) patientsshared their stories with the nation as PHA Bulgaria(APH Bulgaria) and the National Alliance of Peoplewith Rare Diseases (NAPRD) partnered to hold animpactful press conference at the Bulgarian NewsAgency. The press conference provided a candidreflection on what life is like for patients livingwith PH in Bulgaria. Later the same day, patients gathered outside theBulgarian Ministry of Health to demonstrate howeven gentle exercise can take a huge toll on peoplesuffering from PH, leading to breathlessness,fainting and fatigue. As part of the “Take a Breathwith Me” campaign, people with PH performedlow-impact exercises in front of a crowd of jour-nalists and passers-by so that people could see first-hand the effects of physical exertion on PH-suf-ferers. Members of the public were invited to ‘takea breath with me’ by breathing air through a straw,with a peg on their nose, to understand the strugglefor breath that people with PH experience on adaily basis. The combination of strong, patient-focused case

studies and an immersive, experiential stunt paid off,with these World PH Day activities gaining coverageacross two television channels, radio and severalprint and online media outlets. These results are anamazing reward for the dedicated work of allinvolved! And the hard work didn’t stop at raising awarenessof PH among the general public. APH Bulgaria andNAPRD have extended their partnership to delivera number of training sessions for medical profes-sionals at universities in Sofia, Pleven and Haskovo,with additional seminars planned in Burgas andVarna. As a rare condition, the symptoms of PHcan even be overlooked among healthcare profes-sionals. With early diagnosis essential for a goodprognosis, so we hope that the benefits of educa-tional activities such as these will be seen for manyyears to come!

Todor Mangarov, PHA Bulgariawww.apph-bg.org

www.facebook.com/aph.bulgaria

WORLD PH DAY 2014 - PHA BULGARIA

MEMBERS OF THE PUBLIC“TAKE A BREATH” WITH PH PATIENTS

1312

WORLD PH DAY 2014 - CZECH REPUBLIC

VISITORS OF PRAGUE’S OLDESTSQUARE GET NEW LESSON IN PH

Prof. Javel Pansa being interviewedKaterina Nováková being interviewed

We wanted our World Pulmonary HypertensionDay activities to make a big impact. Situated infront of the Prague Castle and Hradčan, HradčanskéSquare boasts the most magnificent and famousviews of Prague. This is why the Czech pulmonaryhypertension patient organization chose HradčanskéSquare, one of the oldest squares in the capital, asthe location for our event. The event began in the morning and was attendedby crowds of people, Czechs and tourists alike. Therewas an anchorman who encouraged passers-by tovisit our booth situated in the center of the square.Visitors were invited to experience the symptoms ofPH and get breathless by doing light workouts on ourfitness machines. During the day, our health care pro-fessionals measured oxygen saturation in their bloodusing a pulse oximeter, before and after visitorscommenced a period of light exercise. After theworkout they could discuss their condition withdoctors and physiotherapists and they were givenleaflets with information about pulmonary hyper-

tension and a blue lip lollipop as a small thank youpresent for getting breathless!Following the event we issued a press release withinformation about the event’s success and detailsabout PH. Thanks to the effort of our PH team,several articles were published on news portalsand appeared on key social networks. Before theevent, visitors were able to learn about the activ-ities via Prague’s most popular radio station -Radio City - which broadcasts informationthroughout the day.The event’s objective was not only to disseminateinformation about the condition, its symptoms andthe importance of early diagnosis but also to high-light the importance of our PH patients association,which brings like-minded people together - becausewhat’s more important than that…

Regina VotavováSdruzení Pacientu° s Plicní Hypertenzí

www.plicni-hypertenze.cz

1514

On May 25,100 bright white “Get Breathless forPH” t-shirts stood out among a sea of pink, aswomen of all shapes and sizes launched in to a fun10km challenge called Women’s Ten, one of themost popular annual sports events in Helsinki. Thousands of women gather in Helsinki forWomen’s Ten on May 25 each year, which callson women of all ages to walk, jog or run a spec-tacular 10km course, surrounded by beautifulcoastal scenery. Media and spectators swarm to theevent, so PHA Finland (Suomen PAH-potilasy-hdistys ry) made the most of the opportunity to usethis hugely popular and enjoyable day to raiseawareness of pulmonary hypertension (PH). Even before the race started, PH was in the spot-light when the Women’s Ten magazine publisheda full page article about PH, the work of PHA

Finland and the story of Jaana Rajahalme who hasbeen living with PH for many years. This article, added to active promotion of the“Get breathless for PH” T-shirts on the Women’sTen Facebook page, which led to a surge of interestfrom race participants wanting to get their handson the T-shirt. On the day itself, the 100 T-shirtswere gone within two hours, long before the raceeven started! Information brochures, blue lipslollipops and World PH Day-branded balloonswere also snapped up. This was an unprecedentedsuccess and it was wonderful to see so manywomen switching their pink Women’s Ten T-shirts for the unmistakable bright white t-shirts ofWorl PH Day, to show their support as they tookto the course to “Get Breathless for PH”. With all the promotion, both at the race and in

WORLD PH DAY 2014 - FINLAND

A PHOTO FINISH FOR PHA FINLANDON WORLD PH DAY!

advance of it, many women were interested infinding out more about PH, and even a celebrity- Finnish pop singer Irina, who performed at theevent - showed her support and cheered on thecrowd! Women’s Ten was a successful and enjoyable dayfor all and PHA Finland looks forward to buildingon these activities next year.

Jaana Rajahalme, Suomen PAH-potilasyhdistys ry. PHA Finland

http://on.fb.me/1tSxFwR

PH Finland members with the famous Finnish singer Irina Saari (center)

1716

Awareness activity at PH medical centers The German Pulmonary Hypertension Associationmarked World PH Day with stands at 11 expertmedical centers. The stands were decorated with thecampaign posters and attracted interest from passers-by who took photos of themselves with blue lips.

Destination Ironman! PH advert attracts traintravelers seeking “breath-taking” adventureIn addition, several German train companies pub-lished our eye catching posters highlighting the

IRONMAN partnership with PHA Europe in theirguide books, and encouraged travelers to attendthe local Frankfurt race.

Hans-Dieter Kulla, pulmonary hypertension e.V.www.phev.de

https://www.facebook.com/pages/Lungen-hochdruck-Deutschland/386143468153378

WORLD PH DAY 2014 - GERMANY

POSE FOR THE CAMERA: GERMANYBRINGS WORLD PH DAY INTO FOCUS

1918

The Hellenic Pulmonary Hypertension (HPH) wasvery active for this year’s World PH Day, organ-izing and participating in a series of events duringthe first fortnight of May. PH Greece intensified itsefforts to reach a larger audience and raise awarenessabout pulmonary hypertension by providing infor-mation in a number of ways, such as participatingin running and cycling events, promoting the purpleribbon symbolizing PH awareness and attendingPH-related scientific conferences. On 27th of April, an enthusiastic group of peoplegathered in the old city of Athens to get peddling forPH for the second consecutive year, with the goal ofmaking cycling a customary part of World PH Day.Not only is the action of cycling tightly connected tothe respiratory and cardiovascular system, but it is alsoa perfect way to attract the attention of the public.A happy crowd of people joined together on theSunday morning in the busiest and most beautiful partof Athens, with a big smile on their faces, the purpleribbon on their chest and a huge hot-air balloonwith the PH logo flying over their heads. Hundredsof purple balloons filled the sky and were given outby our volunteers to people of all ages creating anamazing spectacle in the streets under the Acropolis. PH Greece took many important steps to advance

the recognition of the association. On 30th of April,Minister of Health, Mr Adonis Georgiadis, held aworking dinner with PH patients and PH specialistdoctors. It was a very constructive meeting and thepresident of HPH, Ioanna Alisandratou, took theopportunity to inform the Minister about a wholerange of issues relating to PH. A few days later, theGreek PH Medical Conference was held and con-cluded with some important decisions being made,including the establishment of a Scientific Com-mittee on PH to facilitate research and communi-cation between PH specialists.Sunday 4 May was a full day for PH Greece.Embracing once again the theme of sports, PHGreece was present for the Athens Half Marathon,an event on a grand scale, attracting more than10,000 runners each year. Five of our volunteerstook part in the race wearing the iconic “GetBreathless for PH” t-shirt. Later that day, PH Greecegot together with other patient associations in anevent that took place to foster solidarity and presentgood practices and innovative ideas to an inter-ested audience as well as to each other. The purpleribbon was also sent out to PH specialists in hospitalsof Athens and Thessaloniki where the doctors woreit on their chests for the whole following week,

WORLD PH DAY 2014 - GREECE

PURPLE CELEBRATIONS LIGHT UPTHE ACROPOLIS

from 5 to 11 of May. PH Greece has made consistentefforts to expand its reach beyond Athens and on theweekend of 10-11 May we found ourselves in Thes-saloniki - the second biggest city of Greece - tolisten to new findings about PH and spent a fruitfulday informing the public about PH.

Ioanna AlissandratouPHA Greece

www.hellenicpulmonaryhypertension.grhttps://www.facebook.com/PulmonaryHyperten-

sionGreece

2120

As part of World Pulmonary Hypertension Day thisyear, Tüdőér Egylet, the Hungarian PH Association,held its event in City Park, a location popular withlocals for sport and recreation. PHA Hungaryorganized a number of diverse and varied programswith a particular focus on sport, especially running.We were extremely lucky to secure the involvementof Dávid Szántó, a Hungarian celebrity TV sportsreporter who participated in the event and helpedwith the event organization. The program started with an extraordinary biologylesson from Kristóf Karlócai, MD, Vice President ofPHA Hungary, who informed the audience about PHthrough a question and answer session. Following theeducational discussion, a traditional Hungariandancing group provided a great performance wearing“Get Breathless for PH” t-shirts. The participants

were eager to race against triathlete Róbert Szaniszlóand so we went on to the running track, which wasset up in the woody area of City Park. The full dis-tance was approximately 2,5 km and over 150runners took on the challenge. Some of the racersaccomplished the track breathing through straws tomimic the feeling felt by people with PH.The tired runners were welcomed over the linewith refreshments and were awarded with smallgifts and a certificate. Following the announcementof the results, the participants were asked to blow upas many balloons as they could. The task was to keepthe air inside the balloons for as long as possible,which was hugely enjoyed by all the children.Towards the end of the day, Róbert Szaniszló pro-vided some insight into the training regime and histriathlon races, which was greatly welcomed.

WORLD PH DAY 2014 - HUNGARY

A JAM-PACKED DAY OF EVENTS MARKSWORLD PH DAY IN HUNGARY

Throughout the event, different activities enter-tained the participants, including a juggler and a“reflex gate”, which was capable of testing the speedof a player, along with other games which tested theskillfulness of the participants. In contrast to last year,the weather was on our side and based on the smiles,everybody had a really great time.PHA Europe and the Hungarian association will beat Ironman Budapest on August 24.

Eszter Csabuda, Tüdőér Egylet www.tudoer.hu

2322

A surprise flashmob was held in the Weizman mall,Tel Aviv, for this year’s World PH Day. The event sawa huge gathering of patients, family, friends and par-ticipants release blue balloons to symbolise thesymptoms of PH while the song “Letter to mybrother” by Elai Botner and Kobi Aflalo was playedto an audience. We hoisted a huge banner with thewords: “Pulmonary hypertension internationalawareness day - if you have unexplained shortness ofbreath, perhaps it is Pulmonary Hypertension. Seeyour physician”. There were some great photographsof the day and we also made a very moving video fea-turing PH patients and the CEO of our organizationto raise awareness of this devastating condition.

Yosef Gotlieb, PH Israelwww.phisrael.org.il

https://www.facebook.com/phisraelorg

WORLD PH DAY 2014 - ISRAEL

BALLOONS FILL THE SKIESIN TEL AVIV

Our World Pulmonary Hypertension Day campaignbegan last year when we decided to look for tworunners to represent us in the Rome Marathon.Skip foward to 2014, and we now have hundreds ofathletes running in support of PH, who know whatthe condition is and are proud to be spreadinggreater awareness of it. This partnership has led toa beautiful friendship between pulmonary hyper-tension patients and athletes - both supporting eachother to achieve their goals.A few days before the run that brought thousands ofpeople to Rome, we took to the front of the MarathonVillage performing a 6 minute walk with athletesand patients. Everybody was very curious about whatwe were doing. Fortunately, “our” athletes wereanswering the questions alongside us - it was theirmission too, to talk about PH and spread the word!On the day of the actual run we were all together,gathered in anticipation of the start. The com-petitors were running 42km, we were (slowly)walking 5km in the Roma Fun Race. It was rainingbut two patients managed to arrive at the finishline with our group. We were all holding our banners

and wearing our t-shirts. It was a day full of joy andamusement, Vittorio had an interview on TV and,what’s more, all our members and friends were happyto be there.Finally, we’d like to mention the Tivoli Marathonthat was organized expressly to mark World PHDay. AIPI and AMIP were in attendance withMarzia Predieri representing her Association, AIPI.Everybody knew why we were in that fantastic spotand “lending our breath to PH patients”. The ath-letes ran along Tivoli’s Roman villas and through thehills and woods nearby, while we did our job assistingthe athletes along the way at the various pit stops.The athletes were proud to wear the “Get Breathless”t-shirts during the race and for those who couldn’trun whilst wearing them, they were excited to putthem on as soon as they reached the finish line. Weare sure that many will go on to proudly wear theirt-shirts in future races.

Vittorio Vivenzio, AMIP Italywww.assoamip.net

http://on.fb.me/15HMVP0

2524

WORLD PH DAY 2014 - ITALY

MARATHON RUNNERS FLY THE FLAGFOR PH ACROSS ITALY

2726

This year, popular Latvian sportsmen, young peopleand young physicians supported pulmonary hyper-tension (PH) patients with high jumps in Old Riganear the Freedom Monument. On 5 May PHALatvia launched the event “78 jumps that take yourbreath away!” in honour of the 78 Latvian pul-monary hypertension patients. Eminent Latvian athletes performed high jumps:Madara Onuzane and Janis Vanags, both Latvianhigh jump champions, Zanna Juskane, biathlonistin the 2014 Winter Olympics games, Gatis Praulitis,Junior champion in biathlon in both Latvia andSweden and Natalija Cakova, a popular athlete.The event was opened by Ieva Plume, PHA LatviaPresident, who roused an audience to participate inthe 20 second flash mob where more than 70 par-ticipants held their nose and held their breath toraise awareness for patients with PH. During thepublic show, jumpers and journalists participated ina 6 minute walking test, and children drew picturesof a heart and lungs.

The PHA Latvia event had huge success in themedia. The campaign was featured on all the TVnews programs and most popular TV channels(Five TV reports, radio, newspapers, and onlinemedia). We have also appeared in articles onlineand in the newspaper Neatkariga Rita Avize, whichwrote about the CTEPH patient Alexandr Korlass.There was also an extensive article featured inanalytical magazine Ir about Ieva Plume and thefundraising for PH patient Zane Lazdina’s lungtransplantation. Another article appeared in weeklymagazine Ievas Veseliba with a cover page about IevaPlume’s experiences as a patient and as PHA LatviaPresident.Ten students from the Medicine Department ofUniversity of Latvia took part as volunteers in ourpositive and energetic event which was hosted bywell-known TV moderator Juris Steinbergs.To finish on more good news - on 16 April, underthe expert guidance of Prof. W. Klepetko, ZaneLazdina underwent double lung transplantation.

The surgery was successful and Zane has returnedhome to Latvia after a post-surgery course and reha-bilitation at the Vienna University Clinic. She feelsvery happy and expresses her warmest thanks toeveryone for the support received. Zane is the firstpatient in Latvia to have new lungs.

Ieva Plume, PHA Latvia www.phalatvia.lv/en/

http://on.fb.me/Vx0udp

WORLD PH DAY 2014 - LATVIA

JUMPING HIGH FOR PH IN LATVIA

PHA Polska organized a mammoth three hour WorldPulmonary Hypertension Day event in the centre ofWarsaw to encourage Polish celebrities to join anoutdoor training session in solidarity with PulmonaryHypertension patients. The celebrities were all greatsports and participated in the cycling fitness ses-sions, which members of the public could also join. During the day, volunteers distributed approxi-mately 850 World PH Day flyers to participants,guests and Warsaw citizens. Actors, singers, TV pre-senters, fashion models and a Kickboxing WorldChampion joined our event in support of this greatcause. All participants got “Breathless for PH” andtogether reached over 259km on the fitness bikesin solidarity with Polish PH patients.As well as receiving a great deal of attention frommembers of the public in Warsaw, our event alsoattracted a lot of interest from the media. Both

national and local TV and radio stations coveredthe event. In total, 50 news items were published,all of which were positive, securing an audiencereach of over half a million!Roughly 1,000 people took part in our event overthe course of the day and more than 200 people tookphotos with the #WorldPHDay poster.In addition to this, people from all over Poland whowere not able to attend on the day pledged theirsupport by dedicating their training sessions toPH patients and publishing their training photoson Facebook.

Agnieszka Bartosiewicz, PHA Polskawww.tetniczenadcisnienieplucne.pl

www.facebook.com/pages/Polskie-Sto-warzyszenie-Osób-z-Nadciśnieniem-Płucnym-i-

Ich-Przyjaciół/1438211746452788?ref=hl

2928

WORLD PH DAY 2014 - POLAND

POLAND “GETS BREATHLESS” IN SOLIDARITY WITH PH PATIENTS

Przemek Saleta, Polish kickboxing World Champion

In Portugal, we celebrated World Pulmonary Hyper-tension Day on 10 May in the public space of Oportocity, where four activities were held: a cycling event,a mega zumba class, a balloon release and finally aflashmob. Thirty cyclists rode through the legendarystreets of Oporto, 110 people released their energyto the rhythm of Zumba in the beautiful gardens ofthe Crystal Palace and 60 children from the DanceCentre of Oporto initiated an amazing flashmob tohundreds of spectators at the Francisco Sá CarneiroAirport.To raise awareness of Pulmonary Hypertension,these activities intended to get participants tired andbreathless, not because they were sick, but becausethey were conducting a physical activity.This activityaimed to raise awareness in order to encourage earlydiagnosis and promote access to specific healthcareand treatments, which could increase patients’ lifeexpectancy. We believe that this event will con-tribute to the consolidation of international cri-

teria for the recognition of the Centres of Excellencein PH and to the promotion of research of newtreatments needed to control this condition. In addition, we launched a campaign on Facebookthroughout the month of May which designated a“Blue Kiss” to every “Like” on the APHP page. Toparticipate, people had to take a “selfie” with theirlips painted blue, and the most original photo wasawarded with a one-night stay in a four-star hotel(with a Spa treatment included) in Luso, a beautifulvillage in the centre of Portugal.The activities had a resounding media success andalso really engaged the public, in the gardens of theCrystal Palace and at the airport, where hundredsof people who previously had no knowledge of thecondition were educated.

Maria Joao SaraivaAssociação Portuguesa de Hipertensão Pulmonarwww.aphp-hp.org - http://on.fb.me/13sawnu

3130

WORLD PH DAY 2014 - PORTUGAL

A “FLYING” FLASHMOB IN PORTUGAL

3332

A number of great events were held in the Republicof Macedonia to mark this year’s World PulmonaryHypertension Day.There was an honorary marathon for patients withPH with young musicians performing on the violinand piano. A group of young ballerinas also dancedfor PH as well as Hip Hop performers and Zumbadancers. Famous Macedonian musicians and bandsalso took to the stage in support of the cause. Theday attracted media coverage from TV news andRadio.To top off our activities, a famous basketball team"Kozuf" which is in the Premier League wore our t-shirts to an event which was broadcast on Mace-donian national television.

Gjurgica Kjaeva, APH Moment https://www.facebook.com/pages/APH-moment-

Macedonia/1404172929805917?fref=ts

WORLD PH DAY 2014 - REPUBLIC OF MACEDONIA

SINGING, DANCING AND PLAYING

FOR WORLD PH DAY

3534

WORLD PH DAY 2014 - SLOVAKIA

MEDIA EXCITEMENT ENSURES PH ISTOP OF THE AGENDA IN BRATISLAVA

To mark World Pulmonary Hypertension Day inSlovakia, 13 doctors from The National Instituteof Cardiovascular Diseases took part in the minimarathon NUTRILITE, along with 1,550 otherrunners. Patients and volunteers supporting Pul-monary Hypertension joined the runners on the 4.2km long run through the streets of Bratislava, show-casing posters and other materials about PH. Theevent gained some great media coverage whichwas reported on commercial TV JOJ. The pressconference highlighted the involvement of the PHgroup and we distributed leaflets and lollipops toattendees. The event was covered by TV personalityMarkiza, who supported our efforts and discussed PHduring the event. This great press coverage ensuredthat PH was top of the agenda for the 2,000attendees and awareness of the condition was hugelyincreased.

Professional workshop and photographic exhibition Our association, along with four other patientassociations launched a project called “TheBeauty of the Moment”, which brings patients

together after an organ transplant, as well as sup-porting the transplantation and donor programin Slovakia. Part of the project involves a pho-tographic exhibition of patients before and afterorgan transplantation. Currently, we are holdingpublic exhibitions in 11 of the largest cities inSlovakia. In each of these cities, there is anopening ceremony, workshops and other accom-panying events such as health checks and profes-sional lectures. The first exhibition was held onthe 4 March in the Slovak National Theatre inBratislava. Every association taking part in theproject prepares an opening ceremony, whichprecedes the specialized program. Each exhi-bition runs for four weeks.A scientific seminar which focused on PH andlung transplantation took place at the first eventhosted by PHA Slovakia, which opened on 25th ofApril in Nitra. Lectures were delivered by spe-cialist PH doctors, clinical psychologists, physiol-ogists and pneumologists, who practice in Vienna.A three-part movie was premiered during the exhi-bition which captured patients’ everyday livesbefore and after transplantation. The first part of the

movie was awarded 1st place in the documentarycategory at the competition in Baden-Baden inOctober 2013. Along with members of the public,patients also attended the event to share theirstories, as well as several journalists who publishedreports and appeared on talk shows about the eventand the condition of PH. At the end of the officialworkshops, an opening exhibition was held at theAndrej Bagar Theatre where printed materials onPH were displayed, as well as a large banner showingcelebrities with blue lip lollipops.

Both of these events were attended by leadingfigures from the health industry, insurance industry,as well as chief physicians and directors of hospitals,the vice-mayor of the city and current mayor'sdeputy also attended, placing PH firmly on themap in Slovakia.

Iveta MakovníkováZdruzenie pacientov s plúcnou hypertenziou

www.phaslovakia.orghttp://on.fb.me/1kyocHg

3736

On 1 May 2014, the Slovenian pulmonary hyper-tension organization, Društvo za pljučno hipetenzijoSlovenije, organized a marathon in a nature resortcalled Mostec in Ljubljana, the capital of Slovenia.The organizers of the event gathered at the chosenlocation in the morning. We started to prepare forthe event, setting up 400 balloons and two beachflags, all of which had the event logo “Get Breathlessfor Pulmonary Hypertension” printed on them. Wealso prepared the track for the marathon by deco-rating it with additional balloons. When every-thing was ready the visitors started to gather.Due to our great display, we had no problemattracting attention. We explained to the visitorswhat we were doing, explained what pulmonaryhypertension is and why it’s important to knowabout the condition and its symptoms. We alsohanded out our t-shirts to them and most werehappy to pose for a photo!Whilst busy handing out t-shirts we got started withthe 6-minute walking test. The two beach flagsmarked the starting line and turning point of thewalking track. The participants held their nosesand were only able to breathe through two straws.When they finished we measured their vital signs

and some of them gave a short interview. We hearda lot of comments such as: “I didn’t expect this tobe so hard” and “I can’t believe some people haveto live like this every day.”There was a huge amount of interest in our 6-minutewalking test but we were keen to get our marathonunderway. More than 40 people participated, allwearing our t-shirts and most of them managed tofinish the 5,000m race with ease. We hired a band, Gino & band, to play at our eventand they started playing shortly after the marathon wasfinished. They played a variety of songs in different lan-guages and they really managed to rock the place! Atthat time we also gave our guests a free lunch.More than 1,000 people were present at the eventand overall we managed to hand out all 500 t-shirts,flyers that we made specifically for the event andmany blue lips lollipops. Our World PH Day activ-ities had a very good media coverage and we areextremely pleased with its results in terms ofawareness raised in the general public.

Tadeja Ravnik, Društvo Za Pljucno Hipertenzijo Slovenijewww.pljucna-hipertenzija.si

http://www.facebook.com/PljucnaHipertenzija

WORLD PH DAY 2014 - SLOVENIA

LJUBLJANA GETS BREATHLESSAND LEARNS ABOUT PH

3938

The Spanish National Pulmonary HypertensionAssociation (ANHP) engaged patients, nurses, daringathletes and members of the public in a huge array ofactivities to mark World PH Day this year. Theseactivities provided a perfect opportunity to raiseawareness of a little-known disease and create a solidfoundation of support with the public for futureengagement and awareness campaigns.

Sporting bonanza leaves crowd breathlesswith excitement To kick things off, patients and athletes grabbed aracket and donned their lycra for the “Fuenlabradacombo”, where people chose to take part in eithera tennis tournament or a double spinning (cyclingon stationary, mounted bicycles) marathon. Wearingtheir WPHD t-shirts with pride, patients jumped onto their bikes and demonstrated their fighting spiritagainst a disease which often makes physical activitya huge challenge. In solidarity with PH patients, agroup of athletes got breathless as they cycled whilebreathing through straws so that they could expe-rience what PH feels like. Committed as the athleteswere, ‘cheating’ was quickly authorized and partic-ipants were told to breathe through their nose toavoid risk of fainting and falling off their bikes!

The Mayor of the city, Manuel Robles Delgado,was among the many members of the public whoshowed up to offer his support, and he was bothastonished and humbled by the activities put on insupport of those with PH. The day’s activities werecrowned with a “Get Breathless” dance compe-tition, with the winners being awarded €500 inreturn for a promise to perform a street dance insupport of World PH Day later in 2014.

Spanish patients take the campaign to newheights in Toledo As if cycling wasn’t enough, brave pulmonary hyper-tension patients set themselves a second endurancechallenge with the “Get Breathless” Walk of Toledo.Patients from all around Spain gathered for a 30minute walk up the famously steep slopes of thehistorical city of Toledo. This is no easy venture forpeople whose everyday activities can be physicallyexhausting.

Children and nurses aren’t forgottenIn other parts of town, children at Ramón y CajalHospital were entertained by a theatre group and theANHP released “Get Breathless” balloons outsidethe entrance, in a spectacular and unmissable display.

WORLD PH DAY 2014 - SPAIN

SPAIN LEFT CATCHING ITS BREATH AFTERA MIND BLOWING WORLD PH DAY EFFORT

Nurses are central to the support of PH patients,whose day-to-day lives are heavily affected by thecondition. Yet, there is a lot of stress associatedwith caring for PH patients and coping with theeffects of clinical worsening. To help support nursesin their vital role, ANHP facilitated a workshop,“Care for yourself so that you can Care”, to providenurses with the tools to cope with the day to daypressures of their role and continue providingexcellent care to patients.

Mallorca IRONMAN is a fiesta of fun in support of PH patientsCelebrations weren’t just held in mainland Spain.World PH Day was also marked in Mallorca, at theannual half IRONMAN race. Thousands of spec-tators gathered to watch the gruelling triathlon, inwhich 3,600 athletes faced a 1.9km swim, 90kmbike before culminating in a 21.1km half marathon(all in a single day!). Ten participants from across the

world took part in the IRONMAN as official PHAEurope entrants. These courageous men and womentook part in one of the toughest endurance tests inthe world to raise awareness and support for patientswith PH. Juan Fuertes, coordinator of ANHP, said:“For people with pulmonary hypertension, everyday is like an IRONMAN race. The Association isvery grateful to the ten athletes who have com-peted in support of PH patients, enabling us topropel a little-known, overlooked yet life-threateningcondition onto the global sporting stage.” During thecompetition, athletes passed under an arch withthe slogan “Get Breathless for PH”, where theyrang the bell to show support for PH patients. Thishelped raise funds for the ANHP.

Irene Delgado, Juan FuertesAsociatión Nacional de Hipertensión Pulmonar

www.hipertensionpulmonar.eshttp://www.facebook.com/hipertensionpulmonar

4140 4140

World Pulmonary Hypertension Day was held in Ukrainefor the first time on 16 May 2014 in Kyiv with a numberof great activities.First up was an action flashmob. Together with patients, vol-unteers and supporters, we gathered at the entrance tothe Cabinet of Ministers. Officials who went to work in themorning on that day were offered to put a plastic bag overtheir head and experience breathing like our patients.They sensibly refused and instead were provided withflyers showing photos of our patients. It received a lot ofpress attention and we gave interviews to four leadingnewscasters, who covered the day in a report as well as beingpublished in ten other news outlets - a great response!We invited our patients from all regions of our country and50 of them were able to join us. Unfortunately not alldoctors could attend the event which was expected due tothe recent unrest in the east of the country.As part of the campaign we visited the representatives ofthe Cabinet and the Ministry of Health and passed anofficial letter from PHA Ukraine and the Society of Patientswith PH, listing the main problems related to the treatmentand care for patients with PH in the Ukraine. We had agreat response and subsequently, have become members ofthe Public Council under the Ministry of Health allowing

us to input into all subsequent steps.Just before noon we arrived at the launch of the first PHcenter in Ukraine on behalf of the Heart InstituteStrazhesko. Cardiology specialists spoke about the center'swork, the basis for diagnosis and the hospitalization ofpatients with PH. After that it was to the outdoor park for extreme sports andentertainment on the water. Our patients rode on cata-marans and kayaks and healthy people, their families andvolunteers “got breathless” to understand what it feels likefor our patients with PH. After the watersports, there wasa ceremonial launch of balloons into the sky with thewishes of each patient. It was really amazing! Then alltogether we planted a linden tree as a symbol of the life andbreath of our planet, once a month we have agreed togather together with patients to water our tree and bring ourwarm smiles to encourage it to grow. Later there was a performance of extreme athletes, racingpulses and respiration which mimicked the breathless stateof our patients, followed by an entertaining concert - liveguitar music party.The event was extremely successful, our patients werehappy and the event resonated strongly with the media andsociety as a whole.

WORLD PH DAY 2014 - UKRAINE

UKRAINE STANDS UNITED WITH PHPATIENTS ACROSS THE COUNTRY

On behalf of all 85 patients with PH who live inUkraine, we express our heartfelt thanks to our strongand inspiring PH family, including PHA Europe. If itwasn’t for your enthusiasm and support we would nothave been able to achieve what we did for patients withPH in Ukraine!

Ocsana AlexandrovaPHA Ukraine

http://pha.org.ua/www.facebook.com/pha.org.ua

4342

WORLD PH DAY 2014 - FRANCE

A SOAPY SUCCESS

IN FRANCEA special ice-hockey match was organized for WorldPulmonary Hypertension Day, in partnership withBayer, to raise awareness of PH and turned out to bethe attraction of the day in Ankara, on 5 May 2014.We were honoured to welcome Pascal Nouma, aformer football player, to the match, who “GotBreathless for PH” with a local ice-hockey team insupport of our cause. In addition to this, a specialdance was choreographed by the local synchronizedice-skating team dramatizing life for PH patients andtheir symptoms. Overall there were approximately 100 participants,including physicians, patients, friends and relativeswho all wore “Get Breathless” t-shirts in support ofthe day.

There was a lot of interest from the media around theevent thanks to celebrity participation and it was ahot topic of discussion the next day. The president ofthe Turkish patient association received a ‘promise’from the Social Security Institution (SSI-the payerinstitution) that following the “Get Breathless” event,they would be pleased to organize a multi-stake-holder meeting, in which patients, physicians, industryand SSI would be involved, to discuss the challengesand possible solutions in the PH field, which is agreat achievement and milestone to be proud of.

Umit AtliPulmoner Hipertansiyon Dernegi

www.phdernegi.org.tr/

WORLD PH DAY 2014 - TURKEY

PHANTASTIC AND PHROSTY EVENTSMARK WORLD PH DAY IN TURKEY

Prof.. Gérald Simonneau

For World PH Day 2014, HTAP France launched acampaign asking people to take photos of themselvesblowing soap bubbles and to share the photos on theassociation’s Facebook page. The success of the campaign reached an unanticipatedpeak when the secretary of the national PH Ref-erence Center attended HTAP’s annual GeneralAssembly and showed great interest in the World PHDay initiative. On the evening of 6 May, the Frenchassociation had a pleasant surprise when the samesecretary of the Center sent in some photos of the PHteam - working at the Pulmonology Department ofhighly regarded key opinion leader, Professor GeraldSimonneau at Kremlin Bicêtre - ‘Getting Breathlessfor PH’. Using her personal camera, the secretarytook photos of the team blowing up a balloon orblowing soap bubbles, promising a candy to all thosethat agreed to take part. Next year, to encourage evenmore participation we will send them some “GetBreathless for PH” t-shirts!

Mélanie Gallant-Dewavrin, HTAP Francewww.htapfrance.com

https://www.facebook.com/pages/HTAP-FRANCE/288261994529082

IRONMAN athletes tackle what is widely considered thetoughest one-day endurance event in the world. The races start with a 3.8 km swim, followed by a180.1 km bike ride and ends with a grueling 42.2 kmrun to the finish line! For Pulmonary Hypertension patients, every day islike an IRONMAN race as even everyday activities,like climbing the stairs, can leave patients strugglingto breathe. PHA Europe is delighted to be an official charitypartner of the IRONMAN European Tour for a secondconsecutive year, allowing us to propel a little-known, overlooked and yet life-threatening con-dition onto the global sporting stage.We have already shown a strong presence atIRONMAN Mallorca, Nice, Klagenfurt, Frankfurt andZurich and are looking forward to an equally strongpresence at IRONMAN Copenhagen on 24 August.Thousands of athletes have already run under the“Get Breathless for PH” branded arch, ringing the bellto show support for PH patients and raising moneyfor local PH associations. A “Get Breathless for PH” exhibition stand at all ofthese venues has also provided educational infor-mation to thousands of attendees. Those braveenough also tested their lung function with thepopular lung function test.Thanks to our bright and colorful attendance atthese races, our message has reached up to a potential1 million attendees and our articles in the officialIRONMAN newsletters have already reached a read-ership of over 100,000. Response from athletes andattendees has been more encouraging than we couldhave ever imagined, with 59 athletes running onbehalf of our cause at the six races and sporting the“Get Breathless for PH” race suits.Amongst these brave athletes was Bojan Atanassow,a 32 year old Mechanical Engineer from Germanywho is currently living in Switzerland. Like manypeople with PH, Bojan has had to overcome his ownstruggles. He completed his first short-distancetriathlon in 2011 but always found swimming a chal-lenge. However, through encouragement and dedi-cated training with his racing partners, MichaelMartin and Karim Chaid - who also raced for PHAEurope in Nice - Bojan competed in his first full-dis-tance IRONMAN on 29 June. This was an incrediblefeat for someone who admitted swimming isn’t hisgreatest strength:“Me and swimming will never be friends, and I amstill a far-from-perfect swimmer. However, I am reallyproud to be supporting people with PH and high-lighting, among some of the fittest people in theworld, that for some people every day is as great achallenge as IRONMAN”.What a great message of inspiration for PHpatients!

4544

WORLD PH DAY 2014 EUROPE - IRONMANIRONMEN GET BREATHLESS AND RING, RING, RING

THE BELL FOR PH PATIENTS

Volunteers at Ironman Mallorca

PH Ambassador K. Chaib, Ironman Nice

Athletes ringing the bell at Ironman Zurich

Expo area at Ironman Mallorca

Patrick Fischer at press conference at Ironman Zurich Ironman Klagenfurt

Volunteers at Ironman Frankfurt

PH Ambassador B. Malo, Nice

Start of the race at Ironman Klagenfurt

PH Ambassador M. Martin, Nice

PH Ambassador E. Jager, Ironman Zurich Juan Fuertes speaking at the Pasta party

4746

PH Ambassador P. Garcin, Ironman Nice

Start of the race, Ironman Mallorca

PH Ambassador, Mallorca Finish line at Ironman Frankfurt

Ironkid with Agnieska Bartosiewicz from the Polish PH association, Ironman Zurich

Volunteers at Ironman Nice

PHA Europe booth, Ironman Mallorca Jutta Ulbrich and Alma Rubio, Ironman Mallorca “Get breathless for PH” arch and bell, Ironman Frankfurt

Swiss volunteers and guests at theIronman Zurich PHA Europe booth

PH Ambassador V. Forstmeyer at Ironman Zurich (left) Volunteers at Ironman ZurichLung function test at PH Europe booth IronmanZurich

Lung function test at PH Europe booth Ironman Zurich

PH Ambassador M. Desmyttere, Ironman Zurich

PH Ambassador A. Steinberg with Willi Oesch, one of the Swiss volunteers, Ironman Zurich

PH Ambassador O. Doyhamboure,Ironman Nice

D. Plese, runner up at Ironman Zurich,from Slovenia, with the President of theSlovenian patient associatio, Tadeja Ravnik

PH Ambassador S. Mayo, Ironman Zurich

From breath-taking scenery to breath-taking IRON courage

On Sunday 29 June, I visited the beautiful Austrian district of Kla-genfurt, just across the border from my home in Friuli Venezia Giulia,in Northern Italy. On any other day of the year, your breath would be taken away bythe rolling hills, soaring mountains and postcard-perfect lake. Not onthis day. On 29 June, the IRONMAN European Tour came to Kla-genfurt and 3,500 men and women from all walks of life launchedthemselves into one of the most gruelling triathlete courses in theinternational sporting calendar. Demonstrating breath-taking courageand determination, the athletes ran into the water at the sound ofthe starting canon to embark upon a 4km swim, a 180km bicycle rideand a 40km run.We witnessed true Corinthian endeavour as man pitted againsthimself and against nature. The surging mass of swimmers in the alpinelake evoked images of the D-Day landings; the bicycle ride called tomind the knights-errant of medieval times and the run imitated theback-breaking training exercises completed by Olympic athletes.These scenes were the result of a healthy explosion of energy,releasing months of training and preparation in a bid to complete oneof the toughest triathlons known to man.The IRONMAN contest is a truly unique event and seeing thesecourageous athletes get behind the “Get Breathless for PH” campaign,and getting breathless in solidarity with PH patients is a breath-takingthing indeed.

Luigi Deciani, guest at Klagenfurt IronmanText translated from Italian by Robin Saikia

From breath-taking scenery to breath-taking IRON courage

On Sunday 29 June, I visited the beautiful Austrian district of Kla-genfurt, just across the border from my home in Friuli VeneziaGiulia, in Northern Italy. On any other day of the year, your breath would be taken away bythe rolling hills, soaring mountains and postcard-perfect lake. Noton this day. On 29 June, the IRONMAN European Tour came to Kla-genfurt and 3,500 men and women from all walks of life launchedthemselves into one of the most gruelling triathlete courses in theinternational sporting calendar. Demonstrating breath-taking courageand determination, the athletes ran into the water at the sound ofthe starting canon to embark upon a 4km swim, a 180km bicycleride and a 40km run.We witnessed true Corinthian endeavour as man pitted againsthimself and against nature. The surging mass of swimmers in the alpinelake evoked images of the D-Day landings; the bicycle ride called tomind the knights-errant of medieval times and the run imitated theback-breaking training exercises completed by Olympic athletes.These scenes were the result of a healthy explosion of energy,releasing months of training and preparation in a bid to completeone of the toughest triathlons known to man.The IRONMAN contest is a truly unique event and seeing thesecourageous athletes get behind the “Get Breathless for PH” cam-paign, and getting breathless in solidarity with PH patients is abreath-taking thing indeed.

Luigi Deciani, guest at Klagenfurt IronmanText translated from Italian by Robin Saikia

Volunteers and IRONMEN ‘Get Breathless’ together

I had the pleasure and honour of representing PHA Europe at three Ironman races (Mal-lorca, Nice and Frankfurt). At these races, we had enthusiastic teams of volunteers fromtwelve member associations helping us with the activities at the booth and race. Whether we had blue skies or dark clouds, unbelievable heat or heavy rain, this did notstop our PH ambassador IRONMAN athletes “Getting Breathless for PH”. Nor did itstop our courageous volunteers from putting in lots of hard work and long hours tomake the event a success. As the athletes battled with breathlessness during some ofthe most challenging endurance courses in the world, our volunteers battled to tell ourstory and raise awareness of PH.The PHA Europe booth housed an extremely popular lung function test - attendeesblew into the device with all their might and the greater their lung functions, the morelights lit up on the lung function test display. Even some of the fittest athletes failed tolight the display to the very top and those that did received a great round of applauseand a “Get Breathless” t-shirt. Everybody walked away from the booth having learntan important message - “nobody can take their lungs for granted”. We might look healthier, stronger and in better shape than the person next to us butour lungs might tell a different story. This is a powerful message indeed!

Juan FuertesAsociación Nacional de Hipertensión Pulmonar

PHA Europe field manager Ironman Mallorca, Nice and Frankfurt

“Get breathless for PH” tattoo

AUSTRIA

BELGIUM

GERMANY

FINLAND

LATVIA

ITALYBSPPH BULGARIA

4948

CZECH REPUBLIC

MEDIA CLIPPINGS

GREECE

5150

PORTUGAL

ISRAEL

REPUBLIC OF MACEDONIA

SLOVENIA

SLOVAKIA

POLAND

On the eve of May 5, members of the PulmonaryHypertension Association Australia (PHAA)gathered on the mid-north coast town of Port Mac-quarie, on the New South Wales for the start ofIRONMAN to mark this year’s World PH Day.More than 2000 athletes took part in the gruellingIRONMAN triathlon that included a 3.8km swim,180km bike ride and 42km run. PH patients and their families, along with thePHAA Treasurer Secretary and employees fromBayer, manned the Pulmonary Hypertension tentnear the finish line to welcome athletes home. Thetent was a hive of activity and was surrounded bymany of the 20,000 spectators throughout the day.

Over the course of the event, the team handed outnearly 2,000 PH-branded cowbells to cheer on theathletes and conducted a PH condition awarenessbike exercise activity, raising nearly $400 for thecharity, while PHAA treasurer Chris McGrath con-ducted an interview for the public broadcaster ABCradio. Federal Member for Lyne, Dr David Gillespie MP,representing the Prime Minister Hon. Tony Abbott,visited the tent and spoke with the PHAAmembers about their experiences with the con-dition. “I realize the difficulty doctors have pickingup a rare disease because so often it can appear assomething else, so it’s good you can raise awarenessaround it”, Dr Gillespie, MP said. Speaking toKylie Bevan, the mother of 10-year-old Fate whowas diagnosed with the condition two years ago,Gillespie added: “It is great your boy can still bewith his friends at school.” PHAA treasurer Chris McGrath said: “This day isbeyond what I expected. To hear IRONMAN PHambassador Jason Shortis (with more than 75IRONMEN under his belt) speak to 2,500 peopleat the VIP event prior to the race was simplyamazing to help raise the profile of PH.” During thespeech Shortis asked the athletes to ring the PH bellas they went past the tent. It didn’t stop ringingthroughout the entire running leg along the waterof the picturesque coastal town on a beautifulautumn day.Adrian Dolahenty from Bayer who PHAA part-nered with for the event, said: “The event cementedthe solid relationship the PHAA and Bayer has,resulting in a deeper level of understanding of the

disease amongst this com-munity of athletes and sup-porters who know just whatit’s like to get tired andbreathless. This was a bril-liant concept requiring a her-culean effort that was exe-cuted so well.”The last word must go to VivMcGrath, whose son Alexdied of PH five years agowhen he was six-years-old:“Let’s get breathless for PH.”

PHA Australiawww.phaaustralia.com.au

5352

WORLD PH DAY 2014 - AUSTRALIA

IRONMAN GOES DOWN-UNDER AS BELLSRING OUT IN SUPPORT OF PH PATIENTS

In partnership with Bayer, China ran a very suc-cessful event in Beijing to mark this year’s WorldPulmonary Hypertension Day. The event, hosted byISeek, was attended by more than 100 participantsincluding payers, policy-makers, physicians, patients,NGOs, research organizations and journalists.Throughout the event we called for increasedawareness of PH and highlighted the unmet need ofpatients, as well as the need to get PH treatmentreimbursed. Many of the leading medical experts in PH came tothe event to show their support, including Prof. HeJianguo, Prof. Wang Chen, Yang Yuanhua, Prof.Cheng Zhaozhong, and many other top opinionleaders in China. A call-to-action letter: “Caring forPH patients” was also signed by around 50 participantsat the event.Keynote speeches were delivered by Prof. ChengXiansheng (the most respected physician in the PHarea, Fuwai Cardiovascular Disease Hospital) andProf. Wang Chen ( Director from Ministry of Health,former director from Chaoyang Hospital), Rino

Aldrighetii (President of PHA in the U.S), and Jun-Shuai Liu ( Director from Qingdao medical insuranceadministration). This was very important to ensureall patients had their voice heard.

Iseek Cultural Centrewww.iseek.org.cn

WORLD PH DAY 2014 - CHINA

PROMINENT DOCTORS GATHER INBEIJING TO GET PATIENTS’ VOICES HEARD

A “Get Breathless for PH” event took place for thefirst time in Ghana in the form of a charity footballmatch in Accra, Ghana’s capital city. For thoseliving in Ghana, football is their national sport andan important part of their culture. Organized by Susanne, a midwife from BerlinCharité hospital and volunteer for health charity,Nima e.V, the game was set up in support of WorldPH Day.The players all wore “Get Breathless for PH” t-shirts and had lots of fun competing and “gettingbreathless” in support of our cause. The event wasa big success and enabled all those involved to expe-rience how those living with PH feel during their dayto day lives. Through sport, everyone who partici-pated was able to get behind World PH Day andenjoy raising awareness of PH.

WORLD PH DAY 2014 - GHANA

A GOAL FOR WORLD PH DAYIN GHANA

5554

WORLD PH DAY 2014 - LATIN AMERICA

LATIN AMERICAN COUNTRIES JOINTOGETHER FOR WORLD PH DAY

WORLD PH DAY 2014 - USA

A PH-ENOMENAL PERFORMANCEIN THE USA

Despite a busy pre-Conference season in the UnitedStates, the Pulmonary Hypertension Associationdid not let the momentum of World PH Day slide bythem! PHA used April and May to host awareness-raising and fundraising activities around the country. As Team Phenomenal Hope, a four-woman team ledby a PH specialist at University of Pittsburgh Schoolof Medicine, prepared for their daunting cross-country non-stop Race Across America, PHAdecided to encourage them in their difficult prepa-rations by hosting Unity Miles events across thecountry. In mid-April, more than 70 groups of peoplein 30 states and Puerto Rico walked, ran, or rode bikesto cover enough miles to symbolically cross the U.S.Dr. Patty George, leader of Team Phenomenal Hope,said that the Unity Miles truly inspired her to keeptraining, and later to keep pedaling as she raced.A few weeks later, the U.S. PH community hadthe opportunity to participate in a forum that theFood and Drug Administration (FDA; the gov-ernment agency that regulates food and medica-tions in the United States) held to re-examine thecriteria that the agency uses to approve drugs. TheFDA chose only a few disease communities to hearfrom, so it was an honor for PHA to be able toorganize attendance both in-person and online at theforum, so that the PH community could share theirneeds and desires in new medication approvals. World PH Day itself saw two important awareness-raising activities. First, people across the nationparticipated in an Online Awareness Day, where theyposted about PH on social media and took picturesof themselves wearing purple, blue, and zebra printto post on Facebook and Instagram. This year,several celebrities tweeted or Facebooked support for

World PH Day, including MichaelBublé, Laura Dern, Florence Hen-derson, and Queen Latifah. Second, PHA kicked off their“Media Blitz” campaign, toencourage people across the nation to contact theirlocal TV and radio stations, requesting that thosestations play any of the three English and Spanish-language PSAs about PH, early diagnosis, and pedi-atric PH research. With everybody’s continued par-ticipation, the PSAs are getting more and moreplay, well beyond just the original contracts withmajor English and Spanish TV and radio networksand even on the U.S. online streaming websiteHulu.com. PHA was also happy to be able to participate in othernation’s World PH Day celebrations. RinoAldrighetti, PHA president, and Julia Friederich,PHA’s International Program Associate, partici-pated in the Saudi Association for PH’s regionalmedical meeting in Muscat, Oman, to work withthem as they set up more of a non-medical patientsupport structure. Rino then went on to Beijing,China to give a presentation to government officialsand medical professionals, to add pressure to iSEEKChina’s fight for access to PH treatments.PHA was happy to be able to participate in theworldwide statement about pulmonary hypertensionthat World PH Day allows, and looks forward to aneven more exciting and effective May 5th next year!

Julia Friedrich, International Program Associatehttp://www.phassociation.org/

www.facebook.com/PulmonaryHypertensionAs-sociation

Twelve Latin American countries joined together toraise awareness of pulmonary hypertension as partof the 2014 World PH day campaign. The cam-paign kicked off with a huge opening event on 29April in Medellín, Colombia. Migdalia Denis, Pres-ident of the Latin America Society (Sociedad Latinade Hipertensión Pulmonar), who organized the eventalongside several of the national PH patient associ-ations, opened the ceremony, which was attendedby over 120 people and featured presentations fromnumerous prestigious medical speakers from acrossLatin America and the USA. The event attractedhuge media attention: four interviews on nationaland pan-regional TV, five radio interviews, con-ducted during peak listening hours, seven articleswere generated in major daily newspapers and fivearticles were secured in top health magazines. Here is a round-up of the activities that took placethroughout Latin America:Argentina organized a PH conference with over 80attendees on 9 May in Córdoba. In Brazil, a 15 kmbicycle race, pedalada, was organized on 4 May inthe city of Recife. A virtual seminar was organizedby the Chilean patient association on 12 May todiscuss the latest medical advancements in PH, ledby Dr. Héctor Cajigas, Director of the PH programat the Henry Ford Health Center. The Colombianpatient association organized a talk with patients,family members and physicians, on 9 May in thenation’s capital, Bogotà. In Costa Rica, World PHDay was marked by a 2 km walk organized in collab-oration with the Hospital Caldéron Guardia. Theactivity was filmed and aired live on Canal 6 Repretel- Television de Costa Rica! In Paraguay, the Instituteof Social Welfare organized an awareness event on

5 May in one of the nation’s most beautiful natureparks. The Mexican PH patient associationorganized a walk in the Parque Viveros de Coyoacánon 4 May. Martha Arenas, President of the associ-ation, provided information about PH to the public,alongside physicians from the National Cardiology.An “Awareness Day”, was organized by theUruguayan association. In El Salvador, WilfredCastro, President of the Asociación Salvadoreñade Hipertensión Arterial Pulmonar gave a live radiointerview for Radio Ysuca 91.7 FM on 5 May. Lastlybut by no means least, in Venezuela the first meetingfor PH patients was organized by the PH Clinic ofthe Hospital Militar Dr. Carlos Arvelo in Caracas, ledby Dr. Alejandro Cortez. To mark World PH Day, the Latin American PHSociety and Bayer also organized an educationalworkshop on PH, called a “Breath of Fresh Air”, forLatin American journalists, in Medellin, Colombia.14 journalists from across South America took partin the informative session. The media learned aboutthe symptoms of PH from world renowned expertsin the field. Journalists were also informed about theimportance of early diagnosis - which can have adirect impact on the survival rate and quality of lifeof patients - and the need therefore to disseminateinformation and raise awareness of PH.Theworkshop ended with a very touching momentwhen participants received “Get Breathless for PH”t-shirts from local children with PH.

Sociedad Latina de Hipertensión Pulmonarhttp://www.sociedadlatinahp.org/

www.facebook.com/www.sociedadlatinahp.org?fref=ts

Migdalia Denis, President of SLHP, WPHD event in Medellin (Colombia) Paraguay FDA Forum with PH patients FDA Forum with PH patients Unity Mile Event San Juan (Puertorico)

Rino Aldrighetti in China

Dr. Douglas Olivares speaking in Medellin (Colombia)

Medellin (Colombia)

56

August 24, Copenhagen, Denmark & Budapest, HungaryIRONMAN PHA Europe will be present with a stand and many activities at the IRONMAN Copenhagenand Budapest races. The Ironman partnership is part of the global campaign to raise awarenessof PH for World PH Day. PHA Europe was present also at Ironman Mallorca, Nice, Klagenfurt,Frankfurt and Zurich (see also pages 44-48).

August 30-September 3, Barcelona, SpainEUROPEAN SOCIETY OF CARDIOLOGY’S ANNUAL CONGRESS PHA Europe delegates will be present at the EUROPEAN SOCIETY OF CARDIOLOGY’S ANNUAL

CONGRESS 2014. This Congress is currently the largest cardiovascular medicine meeting in the world.It covers all disciplines from basic research to clinical practice.

September 6-10, Munich, GermanyEUROPEAN RESPIRATORY SOCIETY’S ANNUAL CONGRESSPHA Europe will also be present with a booth at the EUROPEAN SOCIETY FOR RESPIRATORY

MEDICINE’S ANNUAL CONGRESS 2014. This Congress involves not only leading experts inrespiratory medicine, but also in the entire spectrum of research and practice.

September 17-21, Barcelona, SpainPHA EUROPE GENERAL ANNUAL MEETING PHA Europe will be holding its 2014 GENERAL ANNUAL MEETING in Castelldefels (Barcelona)September. PH Patient Leaders from 27 European countries attended the 2013 meeting.

October 14-15, Paris, FranceCOUNCIL OF EUROPEAN FEDERATIONS PHA Europe will be taking part in the annual meeting of the EURORDIS Councilof European Federations, which brings together representatives of rare diseasefederations in Europe. This meeting will include educational and training sessions.

UPCOMING EVENTS ABOUT PHA EUROPE AND PH

2014

Next PHAE journal

The next Mariposa Journal will be issued in December 2014 (Winter edition). It will also feature reports from the nationalassociations about activities in their countries, updates on research and treatments and any other interesting and rel-evant developments at European level. We would be very grateful if the members could send their contributions bythe 15th of October at latest. These may be sent in the national language and we will provide for translation. Anyphotos should have a minimum resolution of 1 MB. The newsletter will be available in PDF format and in a printedversion. The PDF will be posted on the PHA Europe website. Printed copies will be sent by normal post to the nationalassociations. Many thanks in advance!

AIMS OF PHA EUROPEPulmonary Arterial Hypertension causes breathlessness and is a rare, progressive and currently incurable lung disorder. PHAEUROPE, European Pulmonary Hypertension Association, was founded in 2003 and is registered in Vienna, Austria, as an inter-national non profit organisation. PHA EUROPE is an umbrella organization bringing together Pulmonary Hypertensionpatient associations across Europe. The primary objective of PHA EUROPE is to establish a narrow cooperation between themembers and the European institutions, international organizations and public institutions worldwide and work towardsachieving the best possible standards of care for all European Pulmonary Hypertension patients.

WHAT IS PULMONARY ARTERIAL HYPERTENSION?In patients with Pulmonary Arterial Hypertension characteristic changes occur within the pulmonary circulation, which includethickening of the linings and obstruction of the small pulmonary blood vessels. They are both structurally and functionallyabnormal. In severe cases up to 80% of these very small blood vessels are rendered non-functional. As a result the pressure inthe pulmonary circulation rises well above normal and this places strain on the right side of the heart. This strain can causethe heart to enlarge and the patient may develop heart failure. This is a disease that can affect all ages and is more commonlyseen in females. Pulmonary Arterial Hypertension has an estimated prevalence of about 50 per million population.

TREATMENT OF PULMONARY ARTERIAL HYPERTENSIONOver the past decade a number of evolving therapies that either use complex delivery systems such as 24-hour intravenous orsubcutaneous drug infusion, drug inhalation and, more recently, oral medications, have transformed the outlook for PAH patients.PAH is a condition that can be rapidly progressive and needs careful, ongoing expert care and management. The disease canbe insidious in its onset, with unexplained breathlessness and tiredness as its two main symptoms. If undiagnosed and/or inap-propriately treated the average life expectancy for these patients is estimated to be around 2-3 years. For those patients whofail to respond to medical therapies double lung, or in some cases, heart and lung transplantation may be appropriate.

THE FUTURE FOR PULMONARY ARTERIAL HYPERTENSIONWhile a cure for this aggressive and life threatening disease is still some way off, there is much to be optimistic about. Thereare an ever increasing number of therapies available for the effective treatment for Pulmonary Arterial Hypertension, whichimprove the quality and length of life. The aim for the present should be to ensure that all patients with Pulmonary ArterialHypertension have access to centres of excellence in the diagnosis, management and ongoing treatment of this disease.

a.Cross section of normal pulmonary arteryb.Reduced lumen of pulmonary vessels due to cell proliferation

and remodelling in advanced Pulmonary Arterial Hyper-tension

c. Longitudinal section with pathological changes within thevessels proliferation, deposition of blood clots, thickening)causing difficulties for the heart to pump blood through thelungs

graf

ik: w

ww

.ras

terf

ront

.de

57

NETHERLANDSStichting PHA NederlandP.O. Box 627 - 3800 AP Amersfoort www.pha-nl.nl - info@pha-nl.nl

NORWAYPHA Norway c/o Hall SkåraKantarellgrenda 6 - 1352 Kolsåswww.pha-no.com - hall@pha-no.com

POLANDPolskie Stowarzyszenie Osób z NadciśnieniemPłucnym i Ich Przyjaciółul. Wieluńska 3, 81-084 Gdyniawww.phapolska.orgbartosiewicz.agnieszka@phapolska.orgadmin@phapolska.org

PORTUGAL Associação Portuguesa de Hipertensão PulmonarAvenida Dr. Luis Navega, 38-42 - 3050 Mealhadawww.aphp-hp.orgmariajsaraiva@gmail.com

REPUBLIC OF MACEDONIAAPH Moment st.Tanche Kamberov, 29 - 1000 Gevgeliawww.facebook.com/pages/APH-moment-Mace-donia/1404172929805917?fref=tsgurgica.wix.com/mermaidinsky#!home-eng/c8t9phmomentplus@gmail.com

RUSSIANatasha Charity Fundc/o Evgeniy Komarov - Kondratevsky prospectHouse 57, apartment 6 - St.-Petersburgwww.community.livejournal.com/fond_natashaotzovitesnam@mail.ru - www.nurm.ru

SLOVAKIAZdruženie pacientov s pl·úcnou hypertenziou,o.z.Lucenská, 31 - 990 01 Vel·ký Krtíšhttp://phaslovakia.org/hypertenzia.pluc@gmail.com

SLOVENIADrustvo Za Pljucno Hipertenzijo SlovenijeSlovenska 29, 1000 Ljubljana dbph.slovenije@gmail.comwww.facebook.com/PljucnaHipertenzija

SPAIN

Asociación Nacional de Hipertensión PulmonarAvenida de las Artes, 728300 Aranjuez - Madrid www.hipertensionpulmonar.es informacion@hipertensionpulmonar.es

SWEDENNätverket för PAHc/o Patrik HasselKärrtorpsvägen, 37121 55 Johanneshovwww.pah-sverige.se - patrik@pah-sverige.se

SWITZERLANDSchweizer PH-Verein (SPHV) für Menschen mit pulmonaler Hypertoniec/o Bruno Bossard Im Rossweidli 1 - 8045 Zürichwww.lungenhochdruck.ch - www.sphv.chPresident: praesi@lungenhochdruck.chWebmaster: bosshard@lungenhochdruck.ch

Association HTAP Revivrec/o Mme Lydia Benallouch-MeierChemin des Sports 16 - CH - 1203 Genève www.saph.ch/SuisseRomandePresident: lydia_mb@bluewin.chCoordinator: monika.sorgemaitre@hcuge.ch

TURKEYPulmoner Hipertansiyon DernegiMeriç Sokak Milas 2000 Is Merkezi 5A Blok/26 - Bestepe Ankarauatli@hotmail.com - www.phdernegi.org.tr/

UKRAINEUkraine Association of Patients with Pulmonary HypertensionPanasa Myrnoho str.,14 (litera A)01011, Kievwww.pha.org.ua - info@pha.org.ua

OFFICE AUSTRIA: Gerald Fischer, President - Wilhelmstrasse, 19 - 1120 Vienna - tel. +43 1 4023725 - fax +43 1 4093528 - info@phaeurope.org

OFFICE ITALY: Pisana Ferrari, Vice President - Via G. Vigoni, 13 - 20122 Milano - mob. +39 348 4023432 - p.ferrari@phaeurope.org

www.phaeurope.org

AUSTRIASelbsthilfegruppe LungenhochdruckWilhelmstraße, 19 - 1120 Wienwww.lungenhochdruck.at info@lungenhochdruck.at

BELGIUMHTAP Belgique, AsblPremière Avenue, 83 - 1330 Rixensart htapbelgique@hotmail.com

Patiëntenvereniging Pulmonale Hypertensie vzw Rode Dries 10 - 2288 Bouwelwww.ph-vzw.behendrik.ramaker@skynet.be

BULGARIAPulmonary Hypertension Association37 Hadji Dimitar str, ent. B, fl. 2, ap. 3 5800 Pleven www.apph-bg.orgtodormangarov@abv.org

The Bulgarian Society of Patients with Pulmonary Hypertension - BSPPH1 Geneva str. - 1142 Sofia www.bspph.netbgspph@gmail.com

CZECH REPUBLICSdruzení Pacientu s Plicní HypertenzíNa Moráni 5 - 128 00 Praha 2www.plicni-hypertenze.czinfo@plicni-hypertenze.cz

FINLANDSuomen PAH-potilasyhdistys ry. PHA Finlandc/o Tuulia NäppiKeskijuoksu 19 J 38 - 02920 Espoo, Finlandpha.fin@gmail.com

FRANCEHTAP Francec/o Ludivine ChantraineAllée des Charmes, 821380 Asnières les Dijonwww.htapfrance.comsecretariat@htapfrance.com

GERMANYpulmonale hypertonie e.v.Wormser Straße, 20 76287 Rheinstettenwww.phev.de - info@phev.de

GREECEH.P.H ~ Πνευμονική Υπέρταση ΕλλάδαςMail Box 52700,145 72 Drosia, Athensinfo@hellenicpulmonaryhypertension.grwww.hellenicpulmonaryhypertension.gr

HUNGARYTüdóér Egylet19, Cházár András Utca - 1146 Budapest www.tudoer.hucsabuda.eszter@t-online-hu

IRELANDPHA Irelandc/o Regina Prenderville56 Eccles Street, Dublin 7, Irelandhttp://www.pulmonaryhypertension.ie/pha-ireland/rprenderville@mater.ie

ISRAELPHA Israel13 HaShoshan Street - Beit Shemesh 99590 Israelwww.phisrael.org.ilaryeh35@gmail.com

ITALYAssociazione Ipertensione Polmonare Italiana OnlusVia Vigoni, 8 - 20122 Milanowww.aipiitalia.itpisana.ferrari@alice.it

Associazione Malati di Ipertensione Polmonare OnlusVia Bagnoregio, 51 - 00189 Romawww.assoamip.netinfo@assoamip.net

LATVIAPHA LatviaStr. Celtnieku 6a - 35, SalaspilsLatvia LV - 2121www.phlatvia.lv/en/info@phlatvia.lv

Members of PHA Europe and contact details

5958