PHA’s International PH conference and scientific sessions were held for the 13th time this summer. The chosen location was Orlando, Florida and the conference ran from June 28th until July 1st. It is the biggest conference of its kind and gathered nearly 2000 members from around the world. These are PH patients, families, caregivers, PH-treating health care professionals and researchers. For some PH international leaders, the conference started on June 28th, one day before ordinary conference, with an international leaders’ summit. Forty leaders and associations were represented from five different continents. It was an interesting program that had three objectives:
– Examine case studies
– Discuss ways that patient associations work within local health care systems
– Reinforce global and regional networks

PHA Europe contributed to the program with three speakers: Danijela, Hall & Gerry.
Danijela spoke about the impressive work they’ve done in Serbia related to new accredited PH centers.
Here is how Danijela herself describes the presentation:
«We had a privilege and a great honor to deliver a lecture on the following subject – „PH centers in Serbia and the role of associations in their formation”

 The organizer gave us 30 minutes for this important subject. First and foremost, we mentioned the importance and influence of PH Europe on all aspect of our engagements and activities which led to great successes. We then decided to show a movie under the title “Life with PAH without therapy” that we have made. Thunderous and spontaneous applauses during lecture, but also at the very end were a good proof that we have showed ourselves in a good light, together with discussion that our presentation provoked in which vast majority of attendants eagerly got involved. Everyone in the hall agreed that our presentation was exceptional. »

Gerry presented our White Spot Program, while Hall presented its follow-up: Capacity Building Program. There were also talks from our South American colleagues and it was interesting to see how much access to medication differed from country to country. It was especially sad to hear about Venezuela where the difficult political situation has totally changed the situation for PH patients. A few years ago, numerous PH drugs were available while none of them are available today! One leader from China also gave an interesting view of the patient situation and association work her country. They had several PH drugs available and lung transplants were also performed.

Furthermore, she talked about the bio sample bank and gene research clinical trials that were running in China now with the help from the patient association. The summit was definitely a great way to bond with other international leaders and one leaves with a feeling that we truly are a global PH family!
Here are Gerry’s thoughts on the summit:
«The International meeting on the first day was showing again to all of us how important it is to work together and help each other. We heard several very interesting speeches, including the very professional presentation from Danijela. All the speeches were translated simultaneous to Spanish and I could feel during my presentation with Hall, how much interest and respect we get for our work here in Europe. Many associations around the world are still not self-sufficient and we should focus our energy to achieve this goal together. I was especially impressed by the presentation of Brad Wong, President & CEO from PHA, about the way he is running the association in a very clear and effective structure. Unfortunately, Juan could not come to hold his speech, published in the program, about
ERN in Europe, due to passport problems».

And here are Danijela’s summit summary:

«Major impressions after the first day of the conference were dedicated to international leaders. Everything went perfectly and we had a chance to listen and learn everything about the current situation regarding PH around the whole world».

For most participants, the conference started the next day. Scientific sessions aimed at health care professional were running in parallel with sessions aimed at patients, families and carers. For those of us that have some good knowledge about the disease, the scientific sessions were at most interest. One key topic this year was precision medicine. This is a concept taken from treating cancers, where medication aimed at a special type of cancer and special type of patients (tailor made medicine). The same will, most likely, be true for treating PH patients in the future, according to the scientists. Because there are many different types of PH and also different type of patients. Medication that is especially aimed at certain PH and patient types will probably prove much more effective than a random and all-round type of medication. In the sessions aimed at the patients, their carers and families, less scientific sessions were held. There were, for instance, sessions for newly diagnosed which covered topics related to available therapies, how to continue living and loving life as a chronic ill patient, debunking PH myths and misconceptions, how to work with PH, traveling with PH, etc.
There were also sessions especially aimed at male and female patients. In these sessions, only the given sex could participate. In the male session, for instance, issues like intimacy and not being the breadwinner of the family anymore were discussed. Exercise and PH was also a hot topic that was covered in a session. Supervised exercise for PH patients was highly recommended by the panel of three American PH doctors. Sessions aimed specially at the different WHO groups were also given. Different kinds of support groups also met – for instance parents with PH sick children. (For a complete list of sessions including their handouts, please look here. Please also download Regina’s excellent notes from the sessions she attended from Box by clicking here.) Here are some words by Gerry about one of the workshops he attended:
«There were many very interesting workshops, like the fundraising workshop for example. I learned that every activity, even if it is very small and raises only a few hundred Euros, is important to do and will lead to bigger activities in the future. It is also important to encourage patients to do small fundraising activities in their area and we heard from a small business owner that he asked his suppliers to donate, especially during the festive seasons. It would be a good idea to use our International library and implement all successful fundraising ideas from as many countries as possible. Not only fundraising activities which have been done for PH, but every successful fundraising, even if it was for a different cause».

Danijela also enjoyed the sessions:
«This was also a conference during which leading experts presented us with exceptional lectures about therapies and the course of scientific research. Many lectures also focused on associations and how we can empower them more. It was all presented with practical and concrete suggestions and advices on how we can make our association stronger, more prominent and more financial stable»

Many of the sessions were run in parallel meaning that the participants needed to choose one session out of many to participate. However, some information was given while the entire group was present. This was achieved by running presentations at the lunch and dinner gathering. One especially interesting presentation was given by an award-winning scientist who talked about the importance in gene mutation for diagnosis and treatment of PH patients. He explained how they had achieve remodeling in mouse models when applying certain types of genes in the mice. (BMP9 seemed to be especially important.)

The interesting thing was that this was achieved in mice with many different types of PH. His hypothesis was, that even if PH was caused by, for instance, congenital heart disease, remodeling of the lung vessels would most likely still be possible through gene therapy  since the PH, no matter what kind, had a similar effect on the blood vessels in the lungs. The PH conference is so much more than just attending sessions. All conference participants probably frequently visited the exhibit hall. Here different pharmaceutical companies had stands where you could talk to company representatives and learn more
about their products. Furthermore, Gilead had cooking classes where one could learn about cooking healthy food for PH patients. United Therapeutics had a virtual reality stand where one could see and learn more about the heart and lungs through VR glasses. And Actelion asked participants for help to make a big sign made by wowed strings that will be displayed at their American head office. There was also a stationary bike station with two bikes where healthy participants could bike for 45 minutes on behalf of named PH patients. And handouts of everything from product brochure to ice creams were
commonplace.

 Danijela seemed to thoroughly enjoy the exhibition area:

«We had a chance to speak with pharmaceutical experts on the Exhibition of Pharmaceutical Industries, who very thoroughly informed us about therapeutically options, but also about proper diets, activities and about everything that can contribute to better  quality of patient’s life».

 Here are some added words from Gerry:

“Steve van Wormer added a lot of community feeling with his interviews and with his very nice and colorful badges, which one could collect at the different stands in the exhibition area. It was very nice to talk to our sponsors and to make new contacts nearly every minute». For the PHA Europe presentatives, it was a great way to meet with one of the newcomers in the PH business: ARENA. They are working on a phase three study of an oral therapy. They invited all PHA Europe participants to a lunch and got to know each one of us. They will follow up by contacting each participant in the months to come to discuss possible collaboration during the study.

Here is Gerry’s summary of the ARENA lunch:
«It was very nice by ARENA to host a PHAEUROPE lunch in the hotel restaurant. Seven member associations from PHAEUROPE were present and we had a very good time together».

Danijela also valued the informal pharma meetings:
«During the conference we had a group meeting, and we went to lunch with the representatives of ARENA. They demonstrated great interest and desire for cooperation with associations. As the conference progressed, we also attended several other meetings with key people and representatives of industries and pharma’s». A poster section was also on display for the entire duration of the conference. The posters were accompanied by an expert who would explain about the trial in question. (The xperts were present for three hours of the first day of the conference.) Hall was elected to present one of the trials as he is part of a steering committee of a phase four study by Actelion called TRACE. (See a separate article about this.) It is interesting to see how many new trials are currently run that will hopefully bring new knowledge and new  medication to the field of pulmonary hypertension.

Here are some words by Gerry about the poster stands:
«On the other side of the lobby there was the poster stand with very nice presentations about new drugs, new studies and innovations. Hall can be very proud, not only to be the co-author of an important paper about a study from Actelion with new endpoints, but also being the one who presented the poster to the HCP ́s. This gave PHAEUROPE also a very good image».

A sadder part of the conference area, was the memorial wall. Here participants were encouraged to write the name of a former patient that had lost the fight against PH. Each day of the conference the wall got more and more busy with names of loved ones that are no longer with us. A similar tribute was given at a lunch one day. The announcer encouraged a moment of silence for those who had passed away and asked participants to call out names of family and friend members of PH diseased.
It was a moving experience to sit there in silence and having the silence broken by people calling out names. It is not often that so many PH patients are gathered in one place. Researchers know how to take advantage of this fact and run a research room at every PH conference. Conference participants are encouraged to participate in the research and valuable blood samples are collected and important questionnaires are filled out. The researcher that talked about PH gene mutations revealed that his research would not have been possible without blood samples draws at previous PH conferences. He and his team were at the conference also this year to collect more blood samples. Even a German team of scientists had come to Orlando to collect blood for their study. The research room was constantly full of people. Many participants wanted to give their support to PH research that hopefully will benefit us all in the near future. A fashion show is also a traditional part of the PH conference. This is no ordinary fashion show, since all the models are PH patients. This is a popular and great event that you can read more about in a separate article.

 At the dinner at the last evening of the conference, a special tribute was given to a very special donor. His wife had passed away from PAH, and now he was an old man thinking about how to pass on his wealth. He had chosen to donate 2.5 million dollars to PHA! This is the biggest single donation in their history. At the speech at the dinner, he proclaimed that his wife now probably is sitting up in heaven and applauding his decision. He was sure that the money would be well spent by the association. The evening ending by having an iconic piece in Orlando lit blue. It was their famous Ferris wheel the «Orlando Eye» that were lid up in blue. Finally, it was announced that in 2020 the conference will be held in LA, California. Hopefully, many European PH leaders will be able to join this important and great event at that time. Danijela summarized her impressions of the conference with these words: «My personal impression is that the number of representatives are not adequately, considering the importance of this conference, especially if we consider the number of associations in Europe and within PHA Europe, which together make up more than half of the total number of associations in the whole world. This was a tremendous experience, and a place where we could learn a lot. Here we received a great deal of hope and courage to continue stronger and more persistent in an attempt to find and get our rights».