The next Annual PH Conference is scheduled for 21-24 September 2017.
Further details will follow shortly
Annual PH European Conference 2016
Barcelona, September 15-18
The Annual PH European Conference (APHEC) 2016 took place from September 14 to 18 in Castelldefels, near Barcelona (Spain). We were delighted that the turnout was so good and that the community is expanding, with new countries attending. This year we welcomed patients from three countries which currently do not have an association yet: Estonia, Cyprus and Kosovo. With our help and support we hope they will be able to start one in their countries in the near future. In total we had 63 PH Patient Leaders from 30 countries attanding. And yet again we were very privileged to have a great panel of speakers which included three leading KOLs in the field of PH.
Annual General Assembly
Traditionally the APHEC opens with a speech from the President, followed by the the annual general assembly (AGM). After Luc Matthysen’s speech there was a brief round of introductions of the participants and a warm welcome was extended to the newcomers, the patient representatives from Cyprus, Estonia and Kosovo. The AGM approved the 2015 financial report, presented by the immediate Past President Gerald Fischer and the membership application received from the PH association of Serbia.
Medical guest speakers
This year our guest medical speakers were Professors Irene Lang from Austria, Marc Humbert from France and Maurice Beghetti from Switzerland.
Marc Humbert has played a key role in the setting up of the European Reference Network (Ern) for rare lung diseases, Ern-Lung and this was the topic of his talk. Marc Humbert is the Network Vice Coordinator of the Medical Steering Committee for Ern-Lung (Coordinator is Thomas Wagner, Frankfurt, Germany). This initiative goes back a few years: developing Centres of Expertise and Erns in the field of rare diseases was proposed in the Council Recommendation on an Action in the Field of Rare Diseases (2009) and, more recently, in the Cross-Border Healthcare Directive (2011), as a means of organising care for the thousands of heterogeneous rare conditions affecting scattered patient populations across Europe. From 2017, ERNs will be created as legal entities by the European Union. They will provide for the first time a unique opportunity for clinicians to work across borders in Europe in healthcare in order to tackle this challenge. This is a very important development for the PH community as Ern-Lung will have a section dedicated to PAH and PHA Europe will play an official role in its work. The very complex and strict approval procedure was still being carried out at the time of the APHEC so Marc Humbert could not confirm yet that Ern-Lung would be accepted: we were delighted to receive the announcement of its approval on December 15, just in time for the news to be included in this journal!
Irene Lang’s very interesting, comprehensive and clear presentation reviewed progress in PAH over the past years, analysing the current and future possible treatment options and treatment strategies for PAH as well as CTEPH. She spoke also of the new new and promising technique called “balloon pulmonary angioplasty” (BPA), an alternative interventional strategy for CTEPH patients who are inoperable (cannot undergo pulmonary endarterectomy – PEA) or have residual PH post surgery. Over the last several years, Japanese investigators have gained a lot of experience in the use of BPA in CTEPH patients and have gradually refined the interventional technique for this procedure which is now increasingly being used worldwide with very good results.
It was also a great pleasure to welcome Maurice Beghetti and to hear his talk about paediatric PH, a topic which had never before been discussed at our annual conferences. Maurice is an active member of the Board of the Association for Paediatric PH (PePH), founded in 2007 (www.peph-association.org) with the mission of conducting epidemiological research on PH in children and adolescents. In order to reach this goal, the association has established a disease registry, called TOPP (“Tracking Outcomes and Practice in Paediatric Pulmonary Hypertension”). This is a world wide registry which has generated significant information on paediatric PH. In July 2015, the first phase of the registry closed after including 699 patients, of which over 50% were newly diagnosed. Data from TOPP have been successfully published and the second generation of the registry, named TOPP2 is already on the way. The PePH is interested in exploring possible future collaboration with PHA Europe on paediatric PH and we of course would very much welcome this and look forward to future developments.
The APHEC traditionally includes in its agenda training sessions on different topics. Ieva Plume, Member of the PHA Europe Board (Secretary) gave an excellent talk on the “Art of presentation”, with many tips for successful public speaking, including how to prepare, things to avoid, “hooks” to keep the attention of the audience up and useful links for further reading. The second session was about the use of “mascots” in raising awareness of PH. The perfect example of the successful use of mascots is Pongo, the rare purple baby elephant with only one nostril, who cannot breathe well, created by Ioanna Aliysandratou, President of the Greek PH association. Pongo has become quite a celebrity in Greece and has traveled all over, including to the US for the PHA Conference and has been used in a number of public events and as an educational tool in public schools. A book with Pongo’s story has recently been published in Greek and further activities are planned, including translations into other languages, as requested by many of the participants at the APHEC.
Finally, Gerry Fischer have a very inspirational presentation about fundraising where he presented examples of successful events he has organised for PHA Austria (the annual Zoo Run at Schoenbrunn, the oldest zoo in Europe, the Ghost Run for Halloween, and many more) which can easily be reproduced in other countries and for which he is willing to provide support and guidance. The idea came up just after the session to develop a guide (in collaboration with Hall Skaara) for the members, to provide practical organisational advice.
Industry partner session
As in past years, a session was set aside to meet with our industry partners, to hear about future research and other projects, including collaborative educations ones. We were delighted to have representatives of Actelion, Bayer, Bellerephon (a new player in the field), GlaxoSmithKline and United Therapeutics. We take this opportunity to thank them warmly for their commitment to PH and their continued support to PHA Europe throughout the years.
A special guest from Latin America
At this year’s APHEC we had the great privilege of welcoming Migdalia Denis as a guest speaker. Migdalia is a PH patient herself, she lives in Miami, Florida (USA). Migdalia is Founder of the Venezuelan Society of Pulmonary Hypertension and of the Pulmonary Hypertension Latin Society, founder and leader of the support group for PH patients living in South Florida and Board member of IAPO, the International Association of Patient Organizations, where she represents Latin-America. She is author and co-author of many articles published in science magazines about the advances for PH in Latin America and is Life Coach and leader at many motivational conferences and other events. In her excellent talk she presented the activities of the PH Latin Society and the dramatic challenges PH patient face in some Latin American countries where no drugs or surgery are available.
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 this year went to Serbia, the second to the Republic of Macedonia and third to the Ukrainian Sister Dalila Foundation.
As always some time was set aside for relaxing, talking and just enjoying each others company. It was yet another wonderful PH family gathering!
Annual PH European Conference 2015
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
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
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.
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.