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!