PHAE – Mariposa Journal (2016 Winter N.17)
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PULMONARY HYPERTENSION MariposaJournal WINTER 2016 • PHA EUROPES OFFICIAL JOURNAL • N. 17 Warmest wishes for a Happy New Year from PHA Europe Wilhelmstraße 19 • 1120 Vienna • AUSTRIA • +43 1 4023725 • +43 1 4093528 • [email protected] • www.phaeurope.org Brussels (October 18), hosted by three MEP’s, with the partic- The year ended on a very positive note with the news of the Editors memo ipation of a very prestigious panel of speakers, including the official approval of the European Reference Network (ERN) MEPs themselves, a very high-ranking official of the EU Com- for Rare Lung Diseases, ERN-LUNG, set up by the EU COM- Winter 2016 edition mission, the Directors of the Spanish and UK Organ Donation MISSION as mandated by EU legislation on rare diseases and and Transplant national authorities and the representatives of cross-border health. ERNs will will provide a unique oppor- AustriaAustria the European federations for liver, heart, kidney and lung dis- tunity for clinicians to work across borders in Europe to Dear members, friends and supporters, at the national and EU levels. The main focus of our eases. This event followed up on a cross-condition “Call to tackle the challenge of organising care for the scattered BelgiumBelarus advocacy activities is on access to treatment and Action to Improve Organ Donation and Transplant in the patient populations across Europe afflicted by various rare pul- The year has just come to an end and we are very surgery as these are critical issues for many of our EU”, launched by PHA Europe in 2015 and endorsed by over monary conditions. PHA Europe will be actively involved in BulgariaBelgium proud to present a summary of PHA Europe’s main patients across Europe. Not all approved PH drugs 90 organisations at national and international level. PHA’s the work of the ERN-LUNG with two officially designated activities and achievements in 2016 in this edition are available in all countries across Europe and there Europe’s collaboration with patient federations for diseases members serving on the ERN-LUNG European Patient Bosnia and Herzegovina of the Mariposa Journal. It has been another very are countries where patients do not have access to affecting other organs has opened up possibilities for greater vis- Advocacy Group (ePAG) and one member serving on the core FranceBulgaria productive year for PHA Europe and its members, any drugs at all or to expert centres/surgical facilities. ibility, wider reach and more political influence. The European network. We are invited to the launch meeting in Vilnius, with many successful awareness and advocacy ini- We are also active in advocacy activities aimed at Parliament event had an excellent media coverage, with an esti- Lithuania, in March 2017 and look forward to working on this GermanyCroatia tiatives, conducted both at European and national improving the quality of life, specifically, psycho- mated potential reach of over 78 million. A number of follow exciting new project. levels. We are also delighted to have been able to social support, for patients that the purely medical up activities are planned for 2017. CzechGreece Republic reach out to pulmonary hypertension (PH) patients approach does not address. We believe that through our active engagement in the areas in countries where no patient associations pre- Our activities in the advocacy area have a two- Information and Education described above PHA Europe has contributed to some extent to HungaryDenmark viously existed. As a result of our encouragement pronged approach: the particular, which is specif- PHA Europe is active in the areas of information and edu- improving conditions for PH patients in Europe. At the same time and support, the European PH community is con- ically focused on PH and related issues, and the IsraelFinland cation through our journal, Mariposa, our website, Facebook we are cognizant that we are still far from having achieved our tinuing to expand! more general sphere, involving cooperation with and Twitter accounts and the educational and training sessions objectives. Until minimal standards of care are met in all coun- ItalyFrance other organisations to influence the European legal we hold at the Annual PH European Conference, which are tries, across Europe, our collective efforts must continue. Raising Awareness framework concerning public health. led by internationally recognised experts. Our staff and rep- LatviaGermany Despite notable progress in terms of new treat- At the PH level, we actively support the advocacy resentatives of our member associations attend scientific con- To conclude, we warmly thank our member associations for ments and ongoing research, PH is still a little activities of our member associations with respect gresses, workshops and other public events as participants their enthusiastic participation in our common activities as NetherlandsGreece known disease which leads to late diagnosis for to patient’s needs and rights. and/or speakers. This year members of the Board and Staff of well as to the other patient associations/federations we have many who have it (a correct diagnosis can take up Our cooperative relations’ work includes the parti- PHA Europe took part in over forty such events, where they worked with in our EU advocacy activities. We are grateful NorwayHungary to 2-3 years). Consequently, raising awareness is a cipation in activities organised by scientific soci- were able to bring the views and provide patients’ insights on to our industry partners for their valuable support and look PolandIreland very important part of our mission and is instru- eties, mainly the European Society of Cardiology topics of importance to us. forward to another year of fruitful collaboration. mental is raising the profile of the disease, both in (ESC) and the European Respiratory Society Another important information channel is the PH Library (a PortugalIsrael the general population and in the medical com- (ERS). PHA Europe is active in the European project developed in collaboration with PHA US), which Pisana Ferrari, CEO PHA Europe munity. Lung Foundation (ELF) of the ERS and a member recently celebrated its first anniversary since launch. The TuRussiaTu rItaly key r key PHA Europe’s main awareness activity revolves of our staff is sitting on the ELF Council. Recent PH Library hosts over 200 patient group resources from around the annual celebrations for World Pul- activities initiated by our Council member include around the world in 24 different languages. In just one year CONTENTS SlovakiaTuTuLatvia r key r key monary Hypertension Day (WPHD), now in its the creation of an Advocacy Working Group, the website had over almost 40.000 visits, with 34.000 unique fifth year. Forty-seven PH patient associations (up which will further strengthen the work of patient visitors and 55.000 page views, a great result in terms of the • In 2016 PHA Europe was present at... p. 04 SloveniaTuLithuaniaTu r key r key from 40 last year, 30 of which are in Europe), across organisations and an International Patient Advisory dissemination of reliable and timely information concon- • Annual PH European Conference p. 08 NetherlandsSpain five continents took part in the campaign. The Council, which will increase cooperation with cerning PH across the world. • European Parliament event on Organ Donation events organised by PHA Europe’s member associ- patient organisations around the world. and transplant p. 14 SwedenNorway ations as part of WPHD were very successful in PHA Europe also cooperates very actively with Capacity Building • Collaborative educational projects: PH Library, drawing media attention and gaining the support the main public health European NGOs: we are PHA Europe’s ultimate goal is to set in place a European PH PAH Diary and Time Matters p. 18 SwitzerlandPoland of influential public figures, politicians and members of the Board of the European Patients’ community consisting of empowered national patient associ- • News from European PH Associations: celebrities. Media coverage was again excellent Forum (EPF) and sit on the Drug Information ations working together to achieve common objectives. To TuPortugal r key Austria, Belgium-HTAP, Belgium-VZW, Bosnia and and the WPHD campaign generated an impressive Transparency and Access (DITA) task force of further these aims PHA Europe’s “White Spots” program Herzegovina, Bulgaria-BSPPH, Bulgaria-APH, Croatia, 218 press and online articles, 106 TV broadcasts EURORDIS, the European Organisation for Rare Republic of Macedonia provides start up funds and guidance for new associations Czech Republic, Estonia, France, Germany, Greece, and 20 radio broadcasts, reaching potentially mil- Diseases. With and through these organisations and our Fellowship program provides an opportunity for Hungary, Ireland, Israel, Italy-AIPI, Italy-AMIP, Latvia, Romania lions of people. The online social media campaign we cooperate on issues such as the standardisation member associations to apply for a paid part-time English- the Netherlands, Norway, Poland, Portugal, Republic for WPHD conducted through the “Thunderclap” of Health Technology Assessment and the imple- speaking assistant, who can not only help overcome language of Macedonia, Romania, Serbia, Slovakia, Slovenia, Russia platform which reached over three million people; mentation of the Cross-Border Health Care barriers, but also support to the association in its full range of Spain-ANHP, Spain-FCHP, Spain-HPE, Switzerland-SPHV, our website saw a high rise in engagement