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PHAE – Newsletter Update of recent activities 1. GREAT SUCCESS FOR PHA EUROPE’S CALL ongoing guidance and support of all our Roundtable members (PH phy- TO ACTION IN THE EUROPEAN PARLIAMENT sicians, nurses, international PH patient associations and PHA Europe’s Brussels, June 6 industry partners) to whom we express our sincerest gratitude. PHA Europe’s PH Policy Our challenge moving forward will be to secure organisational endor- brief and Call to action sements for our Call to Action, and to disseminate to as wide an were presented to the audience as possible our key messages: to improve access to expert care, European Parliament in improve awareness and screening, encourage clinical research and Brussels in the course of a innovation, empower patient groups, and assure availability of psycho- very successful launch social support. event on June 6. MEP Mrs The final text of the PH Policy brief, the executive summary and a full Karin Kadenbach (MEP report of the launch event (presentations and audience debate) will be Heart Group) served as available shortly on our website at www.phaeurope.org host, with the support of A photo album of the EP launch event has been posted on PHA Euro- MEP Dr Hannes Swoboda European Parliament launch event, meeting pe’s Facebook page. See: http://www.facebook.com/pages/Pulmonary- (Chairman of the EP room Hypertension-Association-Europe/141060385915366 Socialist group). “Our” speakers included Roundtable members Pisana Ferrari (PHA Europe Vice 2. MARIPOSA NEWS SUMMER EDITION President), Prof. Nazzareno Galiè (University of Bologna, Italy), Dr. Simon The summer 2012 edition of Mariposa Gibbs (Imperial College, UK), and Jean-Luc Vachiéry (Hôpital Erasme News is due out in mid-August. It will ULB, Belgium). I introdu- contain, as always, a section on the acti- ced the Call to Action vities of PHA Europe’s member associa- and the five key messages; tions. There will also be reports and Dr. Paola Testori-Coggi, photos of the EP launch event (see Director General of EU above), the PH World Day (Madrid, Commission DG SANCO May 5), the European Conference on (Health and Consumers), Rare Diseases (Brussels, May 22-25) and addressed assembled guests the International PH Nurse Workshop about EU action in car- (Barcelona, May 8-9)as well as news of diovascular disease and the latest EU develpments in the health pulmonary illness and Dr. From left: Dr. Laurent Nicod, Dr. Simon and research areas. Gibbs, MEP Karin Kadenbach, MEP Dr. Laurent Nicod, Scientific Hannes Swoboda and Gerald Fischer Committee Chair at 3. PHA EUROPE GENERAL ANNUAL MEETING the European Respiratory Preparations are well on their way for PHA Europe’s General Annual Society, lent his support to our initiative. Guests included Members of meeting scheduled for September 12 to 16. For the third year running the European Parliament and representatives from DG Research, DG venue will be Castelldefels, near Barcelona. Fourty PH patient leaders SANCO, the European Patients’ Forum, and the Standing Committee from twenty countries across Europe have already confirmed their atten- of European Doctors, dance. The key medical guest speaker is Dr. Simon Gibbs (Imperial Col- among others. A number lege, UK). The five-day meeting has a very intense schedule and wide- of the PHA Europe Policy ranging agenda. Items for discussion include: brief Roundtable mem- - follow up to the PH Policy brief launch event at EU and national level; bers were also present as - ideas for PH World Day 2013; well as the Board of PHA - “Breathtaking” and future awareness initiatives; Europe. - PHA Europe affiliate Empowerment program 2013; There is no doubt that we - Fundraising for PH; have taken a giant step - the importance of social media and online PH communities (eg. Rare- forward for persons living Connect). with PH on 6 June. Our success would not have Dr Paola Testori-Coggi, Director General of Gerald Fischer, President been possible without the DG SANCO (Health and Consumers) PHA Europe, European Pulmonary Hypertension Association Wilhelmstraße 19 • 1120 Vienna • AUSTRIA • +43 1 4023725 • +43 1 4093528 • [email protected] • www.phaeurope.org.
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