Barcelona, September 17-20, 2015

The Annual PH European Conference (APHEC) is one of PHA Europe’s most important yearly events. It provides PH patient leaders with the opportunity for sharing information and experiences, mutual learning, networking, education and skills development. This year’s meeting took place from September 17 to 20 in Castelldefels, near Barcelona (Spain). 27 countries were represented.

After the opening speech by the President and the introductions of all the attendants we started our three day meeting with the Annual General Assembly, during which the yearly report and 2014 accounts were presented and approved. We also voted on the new Board, whose mandate will run from January 1, 2016 to the 31st of December 2017 and on the membership applications for 2014. The new Board Members are: Luc Matthysen (Belgium), President; Hans-Dieter Kulla (Germany), Vice President; Mélanie Gallant Dewavrin (France), Treasurer; Natalia Maeva (Bulgaria), Vice Treasurer; Ieva Plume (Latvia), Secretary; Laure Rosé (France), Vice Secretary. It was great to welcome into the European PH family the PH associations of Belarus, Croatia, Serbia, Denmark (Denmark was admitted last year as individual member, this year as full member), Romania, Spain (the association FCHP) and Ukraine (URGHA). We are very proud that our PH community has grown so much in past years: with these newcomers PHA Europe now has 39 member associations from 33 countries!

Updates in PH treatment strategies and surgery

Prof. Nazzareno Galiè

It was a very big honour for PHA Europe to welcome at its 2015 APHEC three key international opinion leaders as its guest speakers: Prof. Sean Gaine, pulmonologist, from the Mater Hospital in Dublin, and Prof. Walter Klepetko, thoracic surgeon, from the Medical University Hospital in Vienna (AKH) and Prof. Nazzareno Galiè, cardiologist, from the University of Bologna. Prof. Gaine in his lecture summarised the main PAH therapeutic pathways, the clinical trials conducted up to now, which have led to the approval of many PAH drugs and discussed new future trends in PAH management. Prof. Klepetko provided a very comprehensive review of issues related to lung transplantation surgery, including very promising new techniques for bridging and supporting pre-and-post transplant (ECMO, extra corporeal membrane oxygenation). Prof. Galiè closed the APHEC on Sunday with a detailed summary of the new ESC/ERS guidelines for PH, approved in London in September at the ESC Annual Congress.

Review of the year’s activities

The APHEC, as always, provides the opportunity to review the year’s activities, including:

• Awareness raising activities: World PH Day and the charity partnership with the Ironman European Championship in Frankfurt (see also Summer 2015 edition of Mariposa).
• Activities in the field of advocacy and lobbying.
• “White Spots”/”Fellowship” capacity building programs.
• Fundraising activities and new ideas for future.
• Educational and information resources.

Raising awareness with medical students

Gerald Fischer presented an interesting initiative, carried out at the Vienna Medical University, called “Under pressure”, aimed at raising PH awareness among medical students, which could serve as a “template” for other coutries.

Advocacy and lobbying workshop

Dr. Stanimir Hasurdjiev

In the context of this workshop we had the great pleasure of having as our guest speaker Dr. Stanimir Hasurdjiev, Bulgaria, Member of the Board of the the European Patients Forum (EPF) and Secretary General of the “Patient Access Partnership” (PACT), who gave an overview of the work being carried out in the area and future prospects. Juan Fuertes presented a report on his advocacy activities in the course of the year, with particular reference to his work within several imporant working groups and task forces. To conclude, I gave a brief overview of the current status of the PHA Europe’s “Call to Action to improve Organ Donation and Transplantation across the EU”, launched officially on European (October 10), which to date has about 90 endorsements.

Advocacy case studies

The aim of this session was to share successful advocacy activities conducted at national level. The results achieved by our members are remarkable and include new national programs for PH, drug reimbursement approval, campaigning for organ donation and transplantation and teaming up with larger organizations for more impact.

Fundraising case studies

This session was also very inspirational as a number of interesting and original ideas for fundraising were put forward. The session included a presentation of a crowdfunding initiative conducted in Spain for a charity by EURORDIS, kindly represented at our meeting by Marta Campabadal.

World PH Day awards

One of the highlights of the APHEC was the award ceremony for the best national awareness campaigns for WPHD: the first prize went to Slovakia and the Czech Republic for a joint project, the second to Belgium and the third to The Netherlands.

Industry partner session

As in past years a session was set aside to meet with our industry partners and discuss common projects and educational resources: Actelion, Bayer, GlaxoSmithKline and United Therapeutics. We take this opportunity to thank them warmly for their committment to PH and their continued support to PHA Europe throughout the years.

Other activities

Early morning yoga on the beach and special one-to-one cosultations on specific issues during breaks and free time were new and much appreciated features of this years’ APHEC. We had great feedback in general about our meeting from all the participants, our wonderful European PH family!

Find more information and additional images in the Mariposa Journal Winter 2015.