PHA Europe 2012 February
1. MARIPOSA NEWS WINTER EDITION
The Winter 2011 edition of PHA Euro-pe’s official journal, Mariposa News, wasissued in early January 2012. The journalcovers events taking place in the secondhalf of 2011, including reports of PHA Europe initiatives (General Annual Assembly, Time matters campaign, etc.) as well as the most important Europeanscientific events (ESC and ERS AnnualCongresses, PH Annual Update in Bolo-gna, ESC PH Educational course in Sophia Antipolis, etc.). Extra copies ofthe printed version are available onrequest (firstname.lastname@example.org).
2. “BREATHTAKING” AWARENESS CAMPAIGN FOR RARE DISEASE DAY 2012
The 2012 edition of PHA Europe’s “Breathtaking” campaign was suc-cessfully launched on Rare Disease Day in Brussels on 29th February2012. The campaign launch event took place in central Brussels, witha number of activities taking place, including a very well known Bel-gian dance group performing a routine reflective of the impact of PH and “Breathtaking” postcards and materials, blue lip balms and blue lol-lipops being handed out to passers-by in the historical Galerie de laReine. A press conference was organized with key Belgian PH medicalopinion leaders Prof. Marion Delcroix and Prof. Jean-Luc Vachiéry, representatives of the Belgian Flemish and French-speaking PH patientassociations and PHA Europe President Gerald Fischer as speakers. The Brussels event had over 300 pieces of international media coveragewith an estimated reach of 2,5million. Many other interestingand exciting “Breathtaking” cam-paign activities were organizedaround Rare Disease Day 2012 by PHA Europe affiliate associationsin 15 other countries: Austria, Bulgaria, Czech Republic, Fin-land, Germany, Latvia, Hungary, Italy, Norway, Slovakia, Slovenia, Spain, Poland, Portugal and Swit-zerland. Reports and photos arecurrently being collected fromour the member associations andwill be published in the Spring (special) edition of Mariposa, News due out at the end of April.
3. PHA EUROPE “POSITION PAPER” ON PH
Within the context of the ERS 2011 Annual Congress in Amsterdam,on September 26, PHA Europe convened a roundtable meeting ofinternational medical PH experts and PH patient leaders in order toinitiate work on a common policy brief addressing the many unmetneeds of pulmonary hypertension patients. A first draft circulated shor-tly after the meeting has subsequently been revised to take into accountcomments and amends from various roundtable members. The finalversion is due out at the end of March. The call for action contained inthe policy brief identifies five key areas:
- Centers of excellence
- Awareness and screening
- Clinical research and innovation
- Psycho-social support
- Empowerment of patient groups
Meetings with a number of important stakeholders on the Europeanscene have been scheduled in May, the highlight being a presentationto the European Parliament (EP). Further details to follow shortly.
4. “TIME MATTERS” WHEN YOU HAVE PH: NEW FACEBOOK APP
“Time matters”, a web campaignto raise awareness about theimportance of “time” in PH, waslaunched in the second half of 2011 and will carry through 2012 collecting photos and posts frompatients and family members in Europe and around the world. Thewebsite, which was originally set up in English, is now online in 14 other languages. A new Facebook app designed for the “Breathta-king” campaign now allows patients, family members, friends and sup-porters to send a “Time to breathe” message and thus contribute toraising awareness of the disease. www.phtimematters.com
5. MARIPOSA NEWS SPRING SPECIAL EDITION:
The Spring 2012 issue of Mariposa News will be a special edition devo-ted almost entirely to the “Breathtaking” campaign (as was done in2011). We kindly remind all the members having taken part in thecampaign to send their contributions (and photos) as soon as possibleand in any case no later than March 20. You may send these in yourown language and we will provide for translation. We stress the impor-tance of respecting this deadline as the new Mariposa News must besent out before the end of April 2012. Thank you in advance!
6. WORLD PH DAY 2012!
Preparations are now well on the way for thefirst World PH Day! This very importantevent, promoted by ANHP, the Spanish Pul-monary Hypertension Association, is beingheld on May 5, in Madrid. The World PHDay has received the endorsement of interna-tional PH associations and leaders from five continents and manyscientific societies and organizations worldwide (including ERS, EURORDIS, NORD, ORPHANET, EUROPEAN LUNG FOUNDATION etc.). Theevent has an outstanding programme and a very prestigious panel ofspeakers. www.wphd.es
7. GENERAL ANNUAL ASSEMBLY 2012
The date and venue for PHA Europe’s 2012 General Annual Assemblyare now set and a “Save the date” e-card has been posted to all themembers. The meeting will take place September 12-16 in Castellde-fels (Barcelona). We are now working on a draft agenda for the mee-ting which will be issued shortly to the members for their suggestionsand comments.
Gerald Fischer, President
Pisana Ferrari, Vice President
PHA Europe, European Pulmonary Hypertension Association
PHAE – Newsletter (2012.02.)