ACTIVITY REPORT 2015& WORK PLAN 2016

Dear members, friends and supporters,welcome to PHA Europe’s 2015 annual activityreport and workplan for 2016. As in past years,PHA Europe has been active mainly in the areasof awareness raising, advocacy, capacity buildingand information and education.To start with, we are very happy and proud of theresults of our annual awareness campaign forWORLD PULMONARY HYPERTENSION DAY, May 5th.Over 40 PH patient associations across five conti-nents took part in the campaign, of which twentysix in Europe alone. Importantly, a number of influ-ential public figures, politicians and celebrities pub-lically pledged their support to the campaign. Wehad excellent media coverage, with over 500 articlesin press and online media and almost 100 TV andradio clips, as well as about 500.000 reach throughFacebook and Twitter.Secondly, we had a busy year in the field of advocacy,with a very active and high level involvement in policydiscussions on access to treatment - which is one ofthe really critical areas for our patients - in the contextof a number of European working groups or taskforces we are part of. These include the EUROPEAN

ORGANIZATION FOR RARE DISEASES (EURORDIS), theEUROPEAN PATIENTS’ FORUM (EPF), and the PARTNERSHIP

ON ACCESS TOTREATMENT (PACT). As part of our focus on access to treatment thisyear we decided to initiate a campaign to raiseawareness specifically on the problems of organdonation and transplantation (ODT): shortage ofdonors, long waiting lists, high mortality on lists,lack of transplant centres, etc. We officially launcheda cross-condition “Call to Action to improve ODTacross the EU on October 10, EUROPEAN ORGAN

DONATION DAY (EODD). The Call to Action has sofar received the endorsement of over 90 organi-zations, active at EU and national level. Furtheractivities are planned in this area for next year, seealso the dedicated section of this report.Despite our active engagement we are far fromhaving achieved our objectives. PH is still a little-known disease, diagnosis can take up to threeyears, even in the most advanced countries and,as mentioned above, access to approved treat-ments or transplant is a critical issue in many

others. In addition, the whole area of pyscho-social support, which is vital in a chronic, fatal andprogressive disease such as PH, still needs to beaddressed. Until minimal standards of care aremet in all countries, our collective efforts mustcontinue. PHA Europe’s ultimate goal is to put in place astrong European PH community consisting ofempowered national patient associations workingtogether to achieve common objectives. In thecourse of this year PHA Europe has providedsupport to its member associations through twoprogrammes. The “White Spots” programme pro-vides start up funds and guidance for new associ-ations. The “Fellowship” programme, which providesmember associations with a paid part-time Englishspeaking assistant, is vital to ensure communicationsand overcome language barriers. Educational andtraining opportunities for PH patient leaders werealso available through various channels, includingthe Annual PH European Conference, which fea-tured, once again, a prestigious panel of interna-tionally renowned specialists in PH and other areasof interest to PHA Europe. Our community has further grown this year, withsix new associations joining. It now includes 39 PHpatient associations from 33 countries. PHA Europeis increasingly recognized as the key stakeholder inthe field of PH in Europe. We have this year againbeen asked to endorse important scientific eventsand prestigious educational university programmes.We have been invited to speak at and/or attendnumerous conferences and other events and areactively involved in health care policy through theparticipation not only in the working groups men-tioned above but also in important scientific pro-fessional societies (EUROPEAN LUNG FOUNDATION,ELF) and regulatory agencies (EUROPEAN MEDICINES’AGENCY, EMA).We thank our member associations and our valuedpartners for their continuing support, withoutwhom none of this would have been possible andlook forward to another year of close and suc-cessful collaboration.

Gerald Fischer

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TABLE OF CONTENTS 1. FOREWORD BY THE PRESIDENT

1. Foreword by the President p. 1

2. PHA Europe in brief p. 2Background and mission

Key figures

Membership

3. Organisation and funding p. 3Board and auditors 2014-2015

Managing the organization

4. Main areas of activity 2015 p. 4Awareness

Advocacy

Capacity building

Information

5. Awareness raising 2015 p. 5

6. Advocacy 2015 p. 6

7. Capacity building 2015 p. 7

8. Information 2015 p. 8

9. Workshops and conferences 2015 p. 9

10. Work plan 2016 p. 13Awareness

Advocacy

Capacity building

Information

11. Partnerships 2010-2015 p. 15European non governmental organizations

Pharmaceutical industry

12. Members of PHA Europe 2015 p. 16

The PHA Europe Board is elected every two yearsat the Annual General Assembly (AGA) and consistsof a President, two Vice Presidents, Secretary andVice Secretary, Treasurer and Vice Treasurer. Thereare also two Auditors. The current members of theBoard and the Auditors represent nine patient asso-ciations from seven European countries: Austria,Belgium, France, Hungary, Italy, Norway, Spain. The new Board, whose mandate will run from January2016 to December 2017, was elected at the AGAin September 2015.

The Board meets twice a year, once in the summerin Barcelona during the Annual PH European Con-ference (APHEC) and again in Vienna in the winter.In the course of the year it also holds regular Skypeconference calls. The Board is instrumental for theimplementation of decisions taken at the AGA, aswell as with regard to strategic planning.

PHA Europe is financed by means of membershipfees as well as financial support from the pharma-ceutical industry. This support may take the form ofunrestricted grants or be related to specific projects.

BOARD AND AUDITORS 2014-2015

PHA Europe’s head office is in Vienna. The currentPresident, Gerald Fischer, works out of the Viennaoffice with the support of a full time assistant. Thehead office works in close collaboration with the VicePresident, Pisana Ferrari, in Milan and the Secretary,Juan Fuertes, in Madrid. Two task forces have beenset up to manage the support programmes for thenational associations and IT, coordinated by Hall Skaara,Vice Treasurer, in Oslo. Day to day management typically includes pro-gramming and implementing PHA Europe activitiesand events, networking and coordinating with thenational member associations, correspondence

and contact programmes, monitoring and infor-mation gathering, financial and administrative tasksand liaising with our Brussels based Public Affairsconsultant, implementing EU-level advocacy work.External consultants are also used for legal counsel- Gergely Meszaros in Budapest - as well as bookkeeping and tax advice. A considerable amount oftravel is involved in order to participate in scientificevents and take part in the work of advisory com-mittee meetings and task forces. A reorganization of PHA Europe is planned for2016, with separate functions for Board andStaff.

MANAGING THE ORGANIZATION

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PHA Europe is the umbrella organization for nationalassociations of patients living with pulmonary hyper-tension (PH) in Europe. It was founded in Vienna,Austria, in 2003 and is registered as an internationalnon profit organization. PHA Europe works together with its membersto enhance awareness of PH across Europe,

promote optimal standards of care for peopleliving with the disease, ensure the availability ofall approved treatments and encourage researchfor new medicines and therapies. PHA Europestrives to achieve its objectives through activities infour main areas: raising awareness, advocacy, capacitybuilding, information and education.

PHA Europe was founded in 2003 in Vienna bynine patient associations. Over the years mem-bership grew steadily up to 14 in 2010 and hasmore than doubled since. It currently stands at 39patient organizations from 33 countries: Austria,Belgium (2), Bosnia & Herzegovina, Bulgaria (2),

Czech Republic, Croatia, Denmark, Finland, France,Germany, Greece, Hungary, Israel, Ireland, Italy (2),Latvia, Lithuania, Netherlands, Norway, Poland, Por-tugal, Republic of Macedonia, Romania, Russia,Serbia, Slovakia, Slovenia, Spain (2), Sweden,Switzerland (2), Ukraine (2), Turkey.

2. PHA EUROPE IN BRIEF

KEY FIGURES

MEMBERSHIP

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3. ORGANISATION AND FUNDING

Gerald Fischer Pisana Ferrari MélaniePresident 1st Vice President Gallant-Dewawrin 2nd VP

Luc Matthysen Juan Fuertes Hall SkaaraTreasurer Secretary Vice Treasurer

Gergely Meszaros Hendrik Ramaker Vittorio VivenzioVice Secretary 1st Auditor 2nd Auditor

14 299

n° of countries 2003n° of countries 2010

n° of countries 2014

More than 10.000 members of national associations in 2015

Number of countries 2015

33

BACKGROUND AND MISSION

PHA Europe has successfully conducted annual global awareness campaigns forthe last five years. The first two campaigns were organized on International RareDisease Day (February 28). More recently campaigns have revolved around WorldPH Day (May 5). The theme is sport, with the slogan “Get breathless for PH”. Forthe last three years WPHD celebrations have included the participation as “OfficialCharity Partner” in IRONMAN, one of the the world’s most challenging sport’s events.

Advocacy is one of PHA Europe’s key activities and vital to drive changein health policies both at national and EU level. With the support of a EUaffairs consultant PHA Europe is active in providing input into EU policythrough position papers and submissions to public consultations as wellas contact programmes with key EU COMMISSION officials and MEPs. Itsmain area of interest is access to treatment, including organ transplantation.PHA Europe also provides support to national advocacy initiatives.

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4. MAIN AREAS OF ACTIVITY

AWARENESS RAISING 2015

ADVOCACY 2015

Capacity building activities are important in order to increase theskills and knowledge of the national associations. The “White Spots”programme provides start-up funds and support to new and “young”patient associations. The “Fellowship” programme provides the nationalassociations with a paid part time English-speaking assistant. Lecturesand medical updates from top international PH physicians, trainingsessions and workshops on PH related issues are regularly held at

the Annual PH European Conference.

PHA Europe’s information channels include a website with a geo-locator,which enables patients to find PH experts in Europe, the Mariposa Journal,which is issued twice a year, periodic newsletters and other resources, allof which are available online. Information about relevant issues is postedregularly on PHA Europe’s social media platforms, Facebook and Twitter.Information and educational opportunities are also provided at the AnnualPH European Conference (see below). PHA Europe and its membersinteract on a regular basis by means of an internal Google Group.

CAPACITY BUILDING 2015

INFORMATION 2015

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5. AWARENESS RAISING 2015

World Pulmonary Hypertension DayFor WORLD PULMONARY HYPERTENSION DAY

(WPHD) 2015 once again people around the globewere encouraged to take part in sporting activitiesto “get breathless” for PH. This powerful way of

highlighting theres t r i c t ions on physicalactivity, expe-r ienced by PH patients,provided aneffective way

to raise awareness of PH by bringing the challengesthese patients face to the forefront.In 2015 twenty-six European countries held “GetBreathless for PH” events as part of WPHD. Moreand more celebrity endorsers and influential publicfigures are joining the PH cause every year, including,for 2015, political leaders and health ministers,sporting heroes such as The World’s Strongest Man,Franz Müllner, Olympic Gold Medal swimmer Fed-erica Pellegrini and World Champion free diver,Goran Čolak, as well as the world-known Riverdancegroup, rock bands “Beni and Non Stop” and “Nev-erland” and singing sensation Iván Gardesa. Each country put its own unique twist on theirWPHD events, ranging from Irish dancing fromour Gaelic friends to the breathtaking feat ofclimbing the snowy peaks of Rysy Mountain bymembers and supporters of the Czech and Slo-vakian associations. WPHD activities also tookplace in 17 other countries across the globeincluding Australia, Canada, China, Latin America,the Middle East and the U.S.A, meaning PHawareness was spread across 43 countries in fivecontinents. All the national events worldwide wereshowcased through a dedicated website set up in2013 by the US PH association (PHA) and thereis a detailed report in the Summer 2015 editionof the Mariposa Journal. This year, in Europe, in addition to the activitiesconducted around the “Get breathless for PH”theme, we also introduced the #BreathofSuccessinitiative to the campaign, an educational, story-

sharing activity that aimed to increase understandingof chronic thromboembolic pulmonary hyper-tension (CTEPH), the only type of PH to havepotentially curative surgery without having to resortto lung transplant. The media once again played a vital role in acceler-ating the reach of WPHD: it generated over 500print/online articles and almost100 TV/radio clips.Social media also proved to be a great platform todrive momentum and helped us to spread our mes-sages. The PHA Europe Facebook and Twitter pagesreceived a huge surge in page visits and “likes” indi-cating increased levels of engagement. In 2015 PHA Europe launched for the secondyear running a World PH Day “Thunderclap”, anonline social media “flashmob”: one hundred andfifty-eight people signed up to send out a coordi-nated World PH Day message from their socialmedia channels on 5 May, with a social reach ofalmost 140.000 people. We estimate the total socialmedia reach at about 500.000. Finally, there wereover 2.000 uses of the hashtag #BreathofSuccess.

Ironman Official Charity partnershipFor the third year in a row we were proud to bethe Official Charity Par tner of the IRONMAN

EUROPEANTOUR.We were present at the EuropeanChampionship which was held in Frankfurt on July5, with 6 athletes running for PH. Through the race-newsletters alone we reached 100.000people, hundreds of thousands more were reached

through atten-dance at therace and newsposted onI r o n m a n ’ swebsite andsocial media.

OtherPH awareness raising was achieved also throughother channels including the par ticipation ofPHA Europe in international scientific con-gresses, symposia, and industry events (see pages9-12).

Despite the huge progresses made in past years ,which include new treatments, improved surgerytechniques, the introduction of clinical guidelinesand better management of the disease, we arestill far from having achieved our objectives. Muchremains to be done in a number of areas. Accessto treatment, in particular, is a critical issue in manycountries, with dramatic consequences for patientsin terms of health outcomes and the importantrole of pycho-social support is still not fully rec-ognized. Access to treatment in the broader senseof the word also includes organ transplantation.Here again in some countries this is major problem,with either no transplant centres available or verylong waiting lists, with a high mortality while waitingfor the call. Advocacy is therefore a very importantpart of PHA Europe’ activities. Our advocacy actionsare directed mainly at the EU Institutions but wealso support national initiatives.

Advocacy activities at EU levelIn recent years the EU institutions have taken anumber of interesting initiatives in the field ofpublic health which are relevant to PH, for whichPHA Europe has responded to calls for consul-tations or submitted position papers. In thecourse of 2015 PHA Europe submitted positionpapers on two key EU policy documents: the“Preliminary Opinion by the Expert Panel onEffective Ways of Investing in Health - Acccessto Health Services in the European Union” andthe EU cross border directive.We have been very active in the field of access totreatment through our work at EU level in a numberof important working groups such as the Drug infor-mation, Access and Transparency (DITA) task forceof the EUROPEAN RARE DISEASE ORGANIZATION

EURORDIS, the EUROPEAN PATIENTS’ FORUM (EPF)working group on access to treatment, which waschaired by one of our members this year and thePATIENT ACCESS PARTNERSHIP (PACT), set up in 2015.With regard to organ donation and transplantionPHA Europe this year has taken the lead inlaunching a cross-condition “Call to Action toimprove organ donation and transplantation across

the EU”. This Call to Action was officially launchedon EUROPEAN ORGAN DONATION DAY (EODD) inLisbon on October 10 and has so far beenendorsed by over 90 organizations, active at bothEU and national levels, including the main scientificprofessional societies in the area of cardiology andrespiratory medicine (ESC and ERS), EURORDIS,and the two main publichealth stakeholders at EUlevel , the EUROPEAN

PATIENTS’ FORUM (EPF) andthe EUROPEAN PUBLIC

HEALTH ALLIANCE (EPHA),as well as a number ofdisease-area relatedEuropean associations rep-resenting kidney, lung, heartand liver patients. Addi-tionally many importantorganizations at nationallevel have endorsed theCall to Action including 12organ donor or transplantsocieties. At EU institution level we are very honouredthat MEP Karen Kadenbach publically supported theCall to Action on October 10 with an article andposts on her social media channels. Contacts withother MEPs and Commission officials have also beenvery very promising in terms of future support. Weare continuing to collect endorsements throughoutthe year and have some interesting follow-upawareness and advocacy activities planned aroundthe Call to Action for 2016 (see page 13).Taking part in international congresses, symposia andother events also provides interesting opportunitiesfor advocacy. Once again this year PHA EuropeBoard Members were invited to speak at and/orattend a number of prestigious such events (seepages 9-12).

National advocacy At national level PHA Europe is active in providingguidance and suppor t to associations facingproblems in the areas of access to treatment andorgan transplantation.

Patient associations give invaluable support topatients and carers in a wide variety of areas,such as providing accessible and understandableinformation about the disease, practical advicefor living with the condition and psycho-socialsupport and are therefore uniquely placed toadvocate patient interests. PHA Europe’s goal isto put in place a strong European PH communityconsisting of empowered national patient asso-ciations, working together to achieve commonobjectives. PHA Europe’s capacity building activitiesinclude support programmes as well as educa-tional and training opportunities.

“White Spots” programmeDespite many new patient associations havingbeen set up in recent years, there are still somecountries without (see the light blue areas onthe map below). Through its “White Spots” pro-gramme PHA Europe offers star t-up funds andsupport for associations wishing to set up andto recently established ones. In January 2015 PHA Europe held a workshopin Oslo, Norway, for PH patients interested insetting up a patient association in their countries

and for recentlyfounded associa-tions. The aim wasto present PHAEurope and i tsactivities and toprovide guidanceand support withregistration anda d m i n i s t r a t i v eissues , pat ient

association management issues, IT and publica-tions. Attendees included PH patient represen-tatives from Belarus, Croatia, Russia, Serbia andthe Ukraine. The workshop was followed up inthe course of the year with Skype calls and con-ference calls with the new associations in orderto help them apply for membership at the PHAEurope Annual General Assembly in September2015.

Contacts have recently been established withpatients in Estonia and Iceland with the aim ofproviding support to help them establish theirown national associations in the coming year.

“Fellowship” programmePHA Europe’s “Fellowship” programme waslaunched in 2013 as a pilot project, with the aimof improving communications between themember associations. English has been the workinglanguage since PHA Europe was first set up in2003. With its rapid expansion between 2010and 2015 language barriers had become a majorchallenge, in par ticular for those associationswhere command of English was limited. Throughthe “Fellowship” programme PHA Europe pro-vides the member associations with a part timeassistant with a good knowledge of English. Thepart time assistant acts as a liaison person withPHA Europe and also helps the association in itsday to day work.In 2015 PHA Europe was able to provide 15national member associations with a “Fellow”:these associations were from Bulgaria (BSPPHand PHA), the Czech Republic, Finland, Lithuania,Greece, Hungary, Italy, Israel, Latvia, Poland, Slo-vakia, Slovenia, Por tugal, Switzerland and theUkraine. The Fellowship programme was very successfuland considerably improved communications aswell as the level of engagement of the nationalassociations in PHA Europe projects such asWPHD and IRONMAN.

Annual PH European ConferenceThe Annual PH European Conference also pro-vides member associations with opportunitiesfor sharing information and experiences, mutuallearning, networking and education and skillsdevelopment (see page 8).

Information materials and resourcesProviding up-to-date information materials is animportant part of capacity building. Read moreabout this on page 8.

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6. ADVOCACY 2015

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7. CAPACITY BUILDING 2015

Endorsements at 20 November 2015:

EUROPEAN ORGANIZATIONS

PHA Europe calls on the European Parliament:

• to closely monitor the Commission’s activities in the field of organ donation and transplantation and request informa-tion on the state of play on a regular basis;

• to support stakeholders - patient and health professional organisations - in their efforts to improve both access to trans-plantation as well as awareness of the importance and enefits to patients;

• to respond to the European Commission’s implementation surveys and other activities on the impact of the Directiveon standards of quality and safety of human organs, Action Plan and funded projects.

PHA Europe calls on other patient associations and health related stakeholders:

• to support and endorse this Call to Action;

• to join forces in advocating for better awareness, availability, and access to organ transplantation;

• to engage in collaborative work with national authorities, patient associations and health professionals and more widelyat European and international level, e.g. within the framework of EU-funded projects.

Vienna, June 1-2015

ESCWorking group on Pulmonary

Circulation & Right Ventricular Function

ERSEuropean Respiratory Society

ELFEuropean Lung Foundation

EURORDISEuropean Organization

for Rare Diseases

EPFEuropean Patients Forum

EPHAEuropean Public Health

Alliance

EFAEuropean Federation of

Allergy and Airways DiseasesPatients Associations

EKHAEuropean Kidney Health

Alliance

EHNEuropean Heart Network

FEDERGFederation of European patient groups affected

by Renal Genetic diseases

ECCEuropean COPD Coalition

CALL TO ACTION to improve Organ Donation and Transplantation across the EU

INTRODUCTION

Organ transplantation is vital for the treatment and quality of life of patients of all ages - including children - living witha wide variety of conditions, such as the ones affecting the liver, kidneys, heart, lungs, pancreas, small bowel and eyes. Inmany cases, organ transplantation is the only treatment option remaining - and a matter of survival. This is the case, forexample, in pulmonary arterial hypertension (PAH), a rare and life-threatening lung/heart condition.

While the EU is taking a number of positive steps to address this situation - by means of an Action Plan, funding ofprojects and a Directive on standards of quality and safety of human organs - large differences in practices and resultsexist across the EU. The demand for organs still exceeds the number of available organs in all EU Member States. More-over, the demand for organs is increasing faster than organ donation rates.

The Pulmonary Hypertension Association Europe is taking the lead in a campaign to improve organ donation and trans-plantation across the EU, in cooperation with other patient associations, as this issue is crucial in a number of conditionsother than PAH, including many rare ones.

PHA Europe’s members, for their part, have committed to promoting this Call to Action and to advocating for betterawareness, availability, and access to organ transplantation on a wide scale and mapping the current state of play of thefield of heart/lung transplantation in their respective countries.

CALL TO ACTION

PHA Europe calls on the EU Member States:

• to work with and support national patient groups to raise awareness of the vital importance of organ donation and in-crease the availability of and access to organs;

• to support their national transplant programmes to ensure they reach their full potential for organ donation throughmore favourable consent systems, improved organisation, coordination, logistics, potential donor reach-out and edu-cation;

• to ensure that national transplant programmes take advantage of any technologies which can increase the number oforgans available (e.g. organ regeneration);

• to exchange good practices and learnings in order to improve awareness of the importance of organ donation, theurgent and growing need for organs, and increase availability of and access to organs;

• to establish and conclude agreements and cooperate with other countries if the national transplant programmes cannotcover all the domestic needs or if there are no transplant programmes in place.

PHA Europe calls on the European Commission:

• to continue with the implementation of its Action Plan and Directive and ensure extension of these activities beyondthe duration of the Action plan, while guaranteeing the participation and involvement of relevant patient organisa-tions;

• to continue to fund projects addressing awareness, availability, access, quality and safety;

• to continue with its implementation surveys to review the impact of the Directive on standards of quality and safetyof human organs, Action Plan and funded projects.

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

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8. INFORMATION 2015

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The dissemination of up-to-date information aboutPH is another important part of PHA Europe’sactitivities. It is instrumental both in raising greaterawareness of the disease and in the empowermentof the national associations.

Journals and newslettersThe Mariposa Journal is produced twice a year. It contains news of activities organized by thenational patients associations, reports on PHAEurope meetings and initiatives, summaries of rel-evant scientific congresses, EU developments inthe field of public health and research as well asthe latest updates on PH treatments. The PHAEurope newsletters are issued periodically andconsist of brief one page summaries of recentactivities in fields which are relevant to PH. Threenewsletters were issued in 2015.The journal is targeted mainly at PHA Europe’smember associations. However, it is also distributedto other patient associations worldwide as well asto a mailing list of selected PH physicians, researchers,nurses, health care professionals, representatives ofNGOs, policy makers at local, regional, national andEU levels, regulatory authorities and pharmaceuticalindustry partners. The journal and newsletters areposted on the PHA Europe website and distributedat major European and international scientific andindustry events such as the EUROPEAN SOCIETY OF

CARDIOLOGY’s and EUROPEAN RESPIRATORY SOCIETY’sannual congresses.

Website, social media and online platformsOther information channels include the PHAEurope website and social media platforms. In thecourse of 2015 we carried out a very compre-hensive review of the website, with improvementsto the geo-locator, which directs viewers to PHphysicians and centres across Europe, with newsections, providing information on different topics,including links to new educational materialsdeveloped in 2015. We also created mobile andtablet versions of the website and focused onsearch engine optimization, in order to improvethe website’s traffic. We were also very active on

social media channels with a very big increase innumber of followers in particular on Twitter, whichwe started only very recently (May 2015) andnow has 650 followers (Facebook has over 7.000). The true highlight of the year in terms of infor-mation dissemination was the launch of “Our

PH Library”, ac o m p r e -hensive onlinep l a t f o r mwhere over200 resources( b o o k l e t s ,v ideos , etc . )from PH asso-

ciations around the world, in 24 languages, havebeen indexed and are readily available for allthrough an easy “search“ function.

Educational & training sessions The Annual PH European Conference (APHEC)gives member associations opportunities for capacitybuilding as well as for information and education.This year’s APHEC fea-tured three interna-tional PH medicalopinion leaders asspeakers, who providedthe attendees with thelatest information onnew drugs, treatmentstrategies, surgery andnew developments inresearch. It also had lectures on advocacy &lobbying at national andEU level and fundraisingand presentations from our industry partners.Seventy-one PH Leaders from thirty-one countriesattended the 2015 meeting.

ConferencesAttending European and international congresses,workshops etc. also provides opportunities for thedissemination of information at a very high level.

PHA Europe representatives are increasingly invited to take part in important congresses, symposia,workshops and other events. They take part in the work of advisory committees, task forces and workinggroups of important scientific societies, EU regulatory agencies and European NGOs. In the course of2015 there were an average of two such events per month. This activity cuts across all of the four mainareas of PHA Europe’s work: awareness, advocacy, capacity building and information:• Attending scientific events gives PHA Europe great opportunities to raise awareness of the disease as

well as to be in the loop of the most recent developments in PH and public health related issues. • Being part of advisory committees, task forces or working groups of prestigious organizations provides

opportunities for advocacy and input into health policies. • Training workshops have a key educational role and give those attending the possibility of becoming

better advocates, both at European and national level.• Being members of larger organisations (EURORDIS, the EUROPEAN PATIENT’S FORUM, the EUROPEAN PUBLIC

HEALTH ALLIANCE) has many advantages, such as raising awareness of PH issues in wider audiences.• Finally, all meetings have great networking potential, a key ingredient of awareness raising and

advocacy.

9. WORKSHOPS AND CONFERENCES 2015

Brussels, January 14 DITA TASK FORCE CONSULTATIONON SUPPLEMENTSDITA is the DRUG INFORMATION, TRANSPARENCY AND

ACCESS task force of EURORDIS, the EUROPEAN

ORGANIZATION FOR RARE DISEASES. Juan Fuertesand Luc Mattysen are both members and tookpart in this consultation on behalf of PHA Europe.

Oslo, January 15“WHITE SPOTS” TRAINING MEETINGThis meeting was organized to present PHA Europeand provide guidance and support to PH patientssetting up new PH associations in their countriesand for recently founded groups. It was attendedby PH patients from Belarus, Croatia, Russia, Serbiaand the Ukraine. “White Spots” are the countrieswhich have no patient associations.

Brussels, February 23 EURORDIS RARE DISEASE DAY POLICYMEETING

Juan Fuertes, LucMatthysen, PisanaFerrar i , Hans-Dieter Kulla andGergely Meszarosattended the

EURORDIS policy meeting on behalf of PHA Europe.The policy meeting was followed by the traditionalRARE DISEASE DAY “Black Pearl”Gala.

London, March 6-7SIR JOHN VANE SYMPOSIUM ON PROSTANOIDS (UT)This annual international sci-entific conference onprostanoids in the treatmentof PH was attended by over200 medical professionals.PHA Europe was repre-sented by Pisana Ferrari, in the photo at right withLady Jane Vane, wife of the late Sir John Vane, NobelPrize winner for his work on prostacyclins.

Riga, March 18 CHRONIC DISEASES SYMPOSIUMJuan Fuertes represented PHA Europe at this inter-national conference organized within theframework of the Latvian Presidency of the Councilof the European Union. He gave a lecture entitled“Access to Care: Economic and Human Rights”.The symposium resulted in a resolution from Latviaabout involvement of chronic disease patients inhealth care processes and quality of treatmentand care and their reintegration into an activeeconomic and social life

Prof. Nazzareno Galiè from theUniversity of Bologna, Italy, at theAPHEC 2015

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Lisbon, March 22EUROPEAN PATIENTS FORUM (EPF)MEETING Juan Fuertes represented the EPF replacing NicolaBedlington (EPF Executive Director) at a workshopfor high profile international managers of SanofiPasteur.

Barcelona, March 24-25-26 EYE FOR PHARMAJuan Fuertes represented PHA Europe at this con-ference that is mainly addressed to the pharma-ceutical industry. The main objective was to put thepatient at the center of the pharmaceutical world.

Copenhagen, March 27PULMONARY HYPERTENSIONFORUM (ACTELION)Pisana Ferrari represented PHA Europe and wasgiven the honour of opening the forum which fea-tured a prestigiuos panel of speakers and wasattended by over 1.000 persons.

Brussels, March 30EUROPEAN PATIENTS FORUM (EPF)WORKING GROUP ON ACCESSJuan Fuer tes from PHA Europe chaired thismeeting. The outcome of this work was the defi-nition of access in a way that can be measuredand compared in order to evaluate the state ofthe art on access within the EU.

Abu Dhabi, April 9-11 SAPH 2015, SAUDI PH ASSOCIATIONPAH CONFERENCE

Pisana Ferrari, JuanFuer tes and LucMatthysen repre-sented PHA Europeat this impor tantannual PH con-ference. Juan Fuertes

was part of the panel of speakers with a talk on theneeds of PH patients.

Paris, April 13 DIA EUROMEETINGJuan Fuertes represented PHA Europe at the DRUG

INFORMATION ASSOCIATION annual meeting. He metthere with Ieva Plume from Latvia and had contactwith Ariane Weinman who works in the Governanceand Public Affairs of EURORDIS where she is involved inthe EUROPLAN project.

Brussels, May 19-20-21EUROPEAN PATIENTS FORUM (EPF)GENERAL ASSEMBLYLuc Matthysen, Member of the Board, representedPHA Europe at the annual general assembly ofthe EPF.

Madrid, May 28-29EURORDIS MEMBERSHIP MEETINGPisana Ferrari and Juan Fuertes took part in theannual membership meeting of EURORDIS.

Madrid, May 30EURORDIS WORKING GROUP ONRARE BEST PRACTICESPisana Ferrari is part of this working group whichhas as its aim to identify and share best practiceson rare disease management across Europe.

Luxembourg, June 3MEETING WITH EU COMMISSIONPHA Europe was officially invited by Mr. MichaelHuebel, Head of Unit, Health Programme and Dis-eases, DG SANTE, EUROPEAN COMMISSION, in Lux-embourg, to present PHA Europe and its activities.Gerald Fischer and Pisana Ferrari attended onbehalf of PHA Europe.

Madrid, June 16-17ERS PRESIDENTIAL SUMMITJuan Fuertes, represented PHA Europe at thisSummit as member of the Council of the EUROPEAN

LUNG FOUNDATION (ELF). The summit is organizedyearly, the subject was personalized respiratorycare. The highlight of the summit was the presi-

dential speech, which stressed the need to reduceinequalities in access to respiratory healthcare.

Brussels, June 24INTEREST GROUP ON ACCESS TOHEALTHCARE AND PATIENT ACCESSPARTNERSHIP (PACT)Juan Fuertes represented PHA Europe at thisevent in the EUROPEAN PARLIAMENT. Representativesof Permanent Missions and health stakeholdersgathered to follow the progress of the group inmapping barriers to access across the EU.

Riga, July 46TH INTERNATIONAL PH NURSEWORKSHOP (BAYER)Pisana Ferrari and Ieva Plume, representing PHA

Europe, gave a jointpresentation on theactivities of patientassociations, boht atnational level and atEuropean level. Thiswas followed by a

talk by Pisana Ferrari on “Life after lung transplan-tation”.

Frankfurt, July 5IRONMAN EUROPEAN CHAMPIONSHIPPHA Europe was present at the IRONMAN

EUROPEAN CHAMPIONSHIP in Frankfurt with an infor-mation booth and six athletes who were runningwith our colours. Volunteers from the German PHassociation ph e.v. and Members of the PHAEurope Board were present to man the boothand take part in awareness raising activities aboutthe partnership and PH (race briefings, press con-ference).

London, September 1-3 EUROPEAN SOCIETY OF CARDIOLOGY(ESC) ANNUAL CONGRESSPisana Ferrari attended the ESC congress, whichhad over 30.000 participants. Many very interestingsessions at this congress were about PH. The high-

light of the congress for PHA Europe was thepresentation of the new joint ESC/ERS clinicalguidelines on pulmonary hypertension.

Brussels September 3EUROPEAN PUBLIC HEALTH ALLIANCE(EPHA) GENERAL ASSEMBLYJuan Fuertes represented PHA Europe, who hasbeen a member of the since 2014, at itsannual general assembly in Brussels.

Barcelona, September 17-20ANNUAL PH EUROPEAN CONFERENCE(APHEC)This is PHA Europe’s key annual event. Seventy-onePH Leaders from 31 countries attended the 2015meeting which had a wide ranging program andmedical KOLs as speakers (Profs Nazzareno Galiè,Sean Gaine and Walter Klepetko) as well as nineother speakers (including representatives of EURORDIS

and the EUROPEAN PARTNERSHIP ON ACCESS (PACT).

Amsterdam, September 26-30EUROPEAN RESPIRATORY SOCIETY(ERS) ANNUAL CONGRESSPHA Europe had aninformation boothwithin the World Village.PHA Europe was rep-resented by PisanaFerrari and Juan Fuertes.The congress’ atten-dance was over 20.000and many sessions weredevoted to PH. Withinthe context of the ERS meetings of the EUROPEAN

LUNG FOUNDATION (ELF) Council and Patient AdvisoryCommittee were held, attended by Juan Fuertes,Member of the ELF Council.

Lisbon, October 8ERN CONFERENCEJuan Fuertes represented PHA Europe at thisevent which was organized jointly by the EU Com-mission and EURORDIS. The objective of the con-

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Over 40 countries across five continents took partin the 2015 global awareness campaign for WorldPulmonary Hyper tension Day (WPHD) withincredible results in terms of reach and media cov-erage: In 2016 we plan to conduct the campaignalong the same lines: it will be coordinated centrallyby PHA Europe, who will finance the nationalevents upon submission of a detailed project andcost estimate. The members will be provided, asin past years, with guidance and support and avery comprehensive media toolkit which includesbriefings on how to best promote the initiative,how to organize press conferences, merchandisingactivities, etc. We hope to receive additional funding in 2016 inorder to give the opportunity to a greater numberof countr ies to par ticipate . We have alsoencouraged the members to try to turn WPHDinto an annual fundraising event as currently thefunds provided by us only cover expenses.

We are also keen to continue with the Ironman“Official Charity partnership”, which was part ofWPHD also in 2015, with our participation in theFrankfur t IronmanEuropean Champi-onship on July 5th. Weare working on newways to optimise theawareness this eventbrings to the PH cause.As part of our 2016awareness raising activ-ities we will relaunchthe online campaigncalled “Time matters”,which aims to collecttestimonies of patientswho are suffering fromPH, their families andfriends and caregivers.

AWARENESS

ADVOCACY

Our current advocacy activity at the EU levelincludes careful monitoring of any public health orresearch developments potentially of interest tous, the submission of position papers on EU initiativesand actions on specific public health issues.Our main focus for 2016 will continue to be accessto treatment as this is a critical issue for many ofour patients. Not all approved drugs for PAH areavailable in all countries across Europe and thereare countries where no drugs at all are availableor expert centers even exist. We will continue tobe actively engaged at European level in the taskforces and working groups dedicated to access totreatment (see also pages 9-12) as well as collab-orating closely with the members in order toprovide guidance on possible strategies to adopt

at national level to advocate for patient rights inthis area.Very importantly, we will also be following up onthe success of the launch of our “Call to Action toimprove organ donation and transplantation acrossthe EU” (see page 6) by creating an informal groupwith the European associations/federations whichhave endorsed it in order to work together towardsthe possible organisation of an event in the EUROPEAN

PARLIAMENT in Brussels, the aim of which would beto open up a cross-condition, transversal debate onthe major issues at stake and what can steps canconcretely be taken to tackle these. The EP eventshould ideally be held on or around the date of theEUROPEAN ORGAN DONATION DAY (EODD), which isheld yearly by the COUNCIL OF EUROPE in October.

10. WORK PLAN 2016

ference was to present the progress in the creationof European Reference Networks for rare condi-tions across the EU.

Lisbon, October 10EUROPEAN ORGAN DONATION DAY

The EODD is an annualevent organized by theCOUNCIL OF EUROPE onthe fir st Saturday ofOctober. Juan Fuer tes,representing the PHAEurope Board and thePortuguese PH Patientassociation took part inthe celebrations. The EODD

was chosen by PHAEurope as the date to offi-

cialy launch its “Call to Action to improve OrganDonation and Transplantation across the EU”.

Brussels, October 16EUROPEAN PATIENTS FORUM (EPF)STEERING COMMITTEE ON ACCESS Juan Fuertes represented PHA Europe and chairedthis working session. The main outcomes were thedrafting of questions about access for a futuresurvey and the outlining of the Access Campaignthat will be launched by EPF in 2017.

Brussels, October 27CONFERENCE ON PRIORITIES FOR AEU POLICY ON MULTI-MORBIDITYJuan Fuertes represented PHA Europe at this eventthat was the first step in creating a multi-stakeholderworking group that will provide the basis and thenecessary inputs in creating a framework that willaddress the adequate provision of healthcare servicesfor patients living with multiple conditions.

Brussels, October 28EFPIA HEALTH COLLABORATIONSUMMIT EFPIA is the EUROPEAN FEDERATION OF PHARMACEUTICAL

INDUSTRIES. Luc Matthysen and Juan Fuertes repre-

sented PHA Europe at this event. For the first timethe pharmaceutical industry a large number of patientrepresentatives and centered the interest in patientparticipation and inclusion in the healthcare arena.

Brussels, October 28EUROPEAN PATIENTS FORUM (EPF)WORKING GROUP ON ACCESSJuan Fuertes represented PHA Europe at thisworking group meeting.

Brussels, November 17PATIENT ACCESS PARTNERSHIP(PACT) MEETINGJuan Fuertes represented PHA Europe at thisevent held at the EUROPEAN PARLIAMENT andaddressed a comment to the Commission asmember of the steering committee of the EPFWorking Group on Access. The session hosted bythe lead MEPs, with active presence of the repre-sentative of Luxembourg as current President ofthe EU Council, aimed at addressing the suggestionsand remarks to the Expert report on access tohealth services across Europe.

Brussels, November 24DITA FACE TO FACE MEETINGLuc Matthysen and Juan Fuertes attended thisworking session that focused on ethical aspectsof health technology assessment and new method-ologies to obtain more accurate and fair appraisalsof the value of new drugs and technologies.

Brussels, November 27-28-29PHA EUROPE BOARD MEETINGThe PHA EuropeBoard meets twicea year, once in Sep-tember during theAPHEC and oncearound the end ofthe year. It alsoholds regular Skype conference call. The end ofyear meeting is traditionally held in Vienna, headoffice of PHA Europe.

Juan Fuertes with RafaelMatesanz, founder of theSpanish OrganizaciónNacional de Trasplantes

PHARMACEUTICAL INDUSTRY

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PHA Europe is a member of the EUROPEAN

ORGANIZATION FOR RARE DISEASES (EURORDIS) andparticipates in the work of several of its taskforces: the DRUG INFORMATION, ACCESS & TRANS-PARENCY (DITA), the “European Rare Disease Day2019” and “Rare Best practices”. Since 2013 PHAEurope is a member of the EUROPEAN PATIENTS’FORUM (EPF) where it chaired in 2015 the workinggroup on access to treatment. PHA Europe wasalso accepted in 2014 as a member of theEUROPEAN PUBLIC HEALTH ALLIANCE (EPHA).In 2014 one of the Members of the PHA Europe

Board was elected to the Council of the EUROPEAN

LUNG FOUNDATION (ELF), which is part of theEuropean Respiratory Society.PHA Europe members have participated in pastyears, including 2015, in the EU new drug regulatoryapproval procedure as experts at the EuropeanMedicines Agency (EMA). PHA Europe also interacts through many dif-ferent channels with the EU institutions (MEPsand EU COMMISSION officials), other Europeanpatient associations/federations and NGOs aswell as professional scientific societies.

11. PARTNERSHIPS 2010-2015

EU INSTITUTIONS, NGOS, PROFESSIONAL SOCIETIES...

PHA Europe has partnered with the pharmaceuticalindustry on a number of important projects, suchas the development and launch of the Policy Briefand Call to Action, the International Patient andCarer Survey, the Rare Disease Day, World PHDay and IRONMAN global awareness campaigns,as well as on the development of audiovisualmaterials, IT solutions, social media and educa-tional programmes. This partnership takes theform of unrestricted grants or is related to spe-cific projects. It is our intention to continue thisfruitful and welcome cooperation.The PHAEurope “Corporate Committee” (CC) was estab-

lished in 2014 as a means of partnering with thepharmaceutical companies sharing a commoninterest in pulmonary arterial hypertension in astructured manner. This was done much along thelines of the EURORDIS Roundtable of Companiesand the PHA USA CC.Two CC meetings were held in 2015, one inBarcelona in September and one in November inVienna. These meetings provide Members withopportunities for an exchange of views on issuesof common interest.Actelion, Bayer Healthcare, GSK and United Ther-apeutics are current members of the CC.

CAPACITY BUILDING

Building on the achievements of past years, weplan to continue with our support programmesfor members associations. Through our “White Spots” programme we willprovide support to the new associations whojoined PHA Europe in 2015 as well as to recentlyfounded associations who are just starting out. Through the “Fellowship” programme, which is cur-rently in place in 15 countries, we plan to continueto provide the national associations with a part-timeEnglish speaking assistant. We hope to be able toextend the programme to any new member asso-ciations which have significant language barriers.The Annual PH European Conference also providesopportunities for sharing and learning from each

other as well as training sessions on differentaspects which are important in the running of apatient association. For 2016 we plan to repeatwhat we did in 2015 which was to share successfulcase studies from the different countries in thefields of advocacy and fundraising. Our ultimate aim is to put in place a EuropeanPH community of empowered and strong patientassociations. Many associations are new or haveonly been founded recently; much remainstherefore to be done to ensure that they have aminimum structure in place which allows them torun efficiently and provide the necessary supportto their patients as well as to engage in effectiveawareness and advocacy activities.

INFORMATION

PHA Europe’s traditional information materialsare the Mariposa Journal, which is publishedtwice a year, the periodic newsletters, thewebsite and social media channels. Whilst we do not expect to make changes to ourjournal or newsletters in the course of 2016 wedo plan to continue to make improvements toour website: new sections are in the pipeline, wewill “liven up” our news section and will work ona more direct connection with the social mediafeed. Our social media channels saw a great increasein the number of followers in 2015 and we planto build on this in the coming year. We will alsocontinue to work on search engine optimization,in order to improve the website’s traffic. In 2016 we will also continue to work on theproject we launched last year, “Our PH Library”,a comprehensive platform which contains 200resources (booklets, videos, newsletters, etc.)from PH associations around the world, in 24languages, indexed and are readily available for

all through an easy “search“ function.The resultsof the first month post launch were amazing, theplatform had 2.000 unique visitors and over 400returning visitors. This gives us great hopes that itwill become a key reference point for PH patients,

caregivers andhealth care pro-fessionals acrossthe globe . Wewill promote iton all our infochannels andensure that anynew resources

published are uploaded in a timely manner so thatit is always up to date.We will of course also continue to provide infor-mation and educational opportunities through theAnnual PH European Conference and by beingpart of key scientific congresses, work forces andadvisory committees’ work, as in past years.

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ISRAELPHA Israelwww.phisrael.org.ilaryeh35@gmail.com

ITALYAssociazione Ipertensione Polmonare Italiana Onluswww.aipiitalia.itpisana.ferrari@alice.it

Associazione Malati di Ipertensione Polmonare Onluswww.assoamip.netinfo@assoamip.net

LATVIAPHA Latviawww.phlatvia.lv/en/info@phlatvia.lv

LITUANIAŽmonių Sergančių Plautine Hipertenzija Asociacijawww.phalithuania.eukovaliova.nastya@gmail.com

NETHERLANDSStichting PHA Nederlandwww.pha-nl.nlinfo@pha-nl.nl

NORWAYPHA Norway www.pha-no.comhall@pha-no.com

POLANDPolskie Stowarzyszenie Osób z Nadciśnieniem Płucnym i Ich Przyjaciółwww.phapolska.orgbartosiewicz.agnieszka@phapolska.orgadmin@phapolska.org

PORTUGAL Associação Portuguesa de Hipertensão Pulmonarwww.aphp-hp.orgmariajsaraiva@gmail.com

REPUBLIC OF MACEDONIAAPH Moment www.phmomentplus.com.mk http://on.fb.me/1ARacM8 phmomentplus@gmail.com

ROMANIAAssociation of pulmonary hypertension patients www.phader.eu

RUSSIANatasha Charity Fundwww.community.livejournal.com/fond_natashaotzovitesnam@mail.ruwww.nurm.ru

SERBIAPlučna Hipertenzija Srbijadanijela@pesic.rs

SLOVAKIAZdruženie pacientov s pl·úcnou hypertenziou, o.z.http://phaslovakia.org/hypertenzia.pluc@gmail.com

SLOVENIADrustvo Za Pljucno Hipertenzijo Slovenijedbph.slovenije@gmail.comwww.facebook.com/PljucnaHipertenzija

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12. MEMBERS OF PHA EUROPE 2015

AUSTRIASelbsthilfegruppe Lungenhochdruckwww.lungenhochdruck.atinfo@lungenhochdruck.at

BELARUSAid to Patients with PulmonaryHypertensionwww.phbelarus.byphbelarus@yandex.ru

BELGIUMHTAP Belgique, Asblwww.htapbelgique.behtapbelgique@hotmail.com

Patiëntenvereniging Pulmonale Hypertensie vzw www.ph-vzw.behendrik.ramaker@skynet.be

BOSNIA & HERZEGOVINAUdruženje građana oboljelih odplućne hipertenzije “DAH” u Bosni i Hercegoviniugphbih@gmail.com

BULGARIAPulmonary Hypertension Associationwww.apph-bg.orgtodormangarov@abv.org

The Bulgarian Society of Patientswith Pulmonary Hypertension -BSPPHwww.bspph.netbgspph@gmail.com

CROATIAPlava krila - Udruga pacijenata oboljelih od plućne hipertenzijeinfoplavakrila@gmail.comwww.plavakrila.hr

CZECH REPUBLICSdružení Paųs Plicní Hypertenzíwww.plicni-hypertenze.czinfo@plicni-hypertenze.cz

DENMARKPAH Patientforeningenhttp://pah.dkpahforening@gmail.com

FINLANDSuomen PAH-potilasyhdistys ry. PHA Finlandpha.fin@gmail.com

FRANCEHTAP Francewww.htapfrance.comsecretariat@htapfrance.com

GERMANYpulmonale hypertonie e.v.www.phev.deinfo@phev.de

GREECEH.P.H. - Πνευμονική Υπέρταση Ελλάδαςinfo@hellenicpulmonaryhypertension.grwww.hellenicpulmonaryhypertension.gr

HUNGARYTüdóér Egyletwww.tudoer.hucsabuda.eszter@t-online-hu

IRELANDPHA Irelandhttp://www.pulmonaryhypertension.ie/pha-ireland/rprenderville@mater.ie

SPAINAsociación Nacional de HipertensiónPulmonarwww.hipertensionpulmonar.es informacion@hipertensionpulmonar.es

FCHP Fundación Contra la Hipertensión Pulmonarhttp://www.fchp.es/esinfo@fchp.eshttps://www.facebook.com/fundacionhphttps://twitter.com/fundacionhp

SWEDENNätverket för PAHwww.pah-sverige.sepatrik@pah-sverige.se

SWITZERLANDSchweizer PH-Verein (SPHV) für Menschen mit pulmonaler Hypertoniewww.lungenhochdruck.chwww.sphv.chPresident: praesi@lungenhochdruck.chWebmaster: bosshard@lungenhochdruck.ch

Association HTAP Revivrewww.saph.ch/SuisseRomandePresident: lydia_mb@bluewin.chCoordinator: monika.sorgemaitre@hcuge.ch

TURKEYPulmoner Hipertansiyon Dernegiuatli@hotmail.comwww.phdernegi.org.tr/

UKRAINEUkraine Association of Patients with Pulmonary Hypertensiono_kulish@inbox.ru

Ukraine Association of Patients with Pulmonary Hypertensionwww.pha.org.uainfo@pha.org.ua

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Gerald Fischer, President - Wilhelmstrasse, 19 - 1120 Vienna+43 14023725 - mob +43 6642288888

g.fischer@phaeurope.org

Pisana Ferrari, Vice President - Via G. Vigoni, 8 - 20122 Milanomob. +39 3299214217

p.ferrari@phaeurope.org

www.phaeurope.org