World Symposium of Pulmonary Hypertension in Nice

Dear friends,

Ioanna, Agnieszka, Gergely and myself have attended the World Symposium of Pulmonary Hypertension in Nice - for more information about the Symposium please see the footnote.

We would make a very long message with the fabulous work that we have done there, but don't worry, we will give you just the highlights. 

Allow me to start that we all missed Pisana enormously. She has been a key person in the preparation of the World Symposium being the Chair of one of the 13 task forces, the one on "Patient Perspectives", and working with the other members for months on the final paper. We must be proud of having that very high consideration from the scientists to our hardest working member and the most respected voice of the PH patients in Europe.

We have achieved many successful goals, let me go first to the brilliant representation Ioanna has made with the pharmaceutical industry. Thanks to Pisana's previous work and the strong personality of Ioanna, we can count on two new sponsors who have pledged to give us a significant support in the form of unrestricted grants. Grupo Ferrer and Arena are very enthusiastic with our projects and very committed to keep PHA Europe afloat in spite of the drop in donations we started to experience two years ago. Both pharmaceutical companies want to meet again with Ioanna and myself and we are very positive and hopeful on the outcome of our negotiations.

Agnieszka and Gergely have been working like champions to meet and engage PH great specialists from Europe, maintain our credibility and our very good image. Hundreds of Mariposas and activity reports were distributed thanks to them. We have been exchanging views and expectations with our researchers and clinicians.

We have also created great ideas to work in a global effort of PH organizations. We have initiated the dialogue to cooperate with PHA, the Latin Society and PHA Aware beyond the scope of World PH Day. We will also make sure that a new tool to measure quality of life that is born from the patients' community. This will allow us to make a standard universal tool that will help us to measure the outcomes and the differences emanating of the varying degrees of access around the world. It will be a key element to push with very strong data to introduce all treatments in all countries. This is the first time that the patients' community engage in tangible common projects that go beyond the sharing of vision and moral stands.

 

Agnieszka asked me to stress that the communication flow with the other big PH organizations was outstanding. We expect much from an ever stronger cooperation.

On the scientific field we also have much to say. Genetics have advanced enormously, basic research has overflown the limits of pharmaceutical funded research and there is hope and expectation to have PH experiencing deep and meaningful advances in the near future. We have agreed to present to the board a proposal to push for genetic testing as standard procedure in the clinical practice. This is going to change dramatically the efficacy of treatments and patients will have a very important chance to prevent deterioration and avoid treatment failure.

We also continue with our work in defining the endpoints that shape the value of new therapies. We also want to influence the way patient reported outcomes are directing the physicians' approach to clinical practice. Gergely will upload to box the posters that were presented so that you can see the trends and key findings in the past four years.

 

Ioanna and Agnieszka had dinner with Thomas Ernst from Bayer at a nice and cozy restaurant in the old town. Thomas was very excited to have a working dinner with PHA Europe board members who are actually living with PH, their views and their experience made Thomas offer a pledge of increased funding. Movements around the city were complicated because of the carnival that closed many roads, and the snow that made Ioanna and me catch a very bad cold. Unfortunately we could not have dinner with Joëlle from Actelion that could not attend the symposium due to a health setback, but we keep direct communication with her, which is very pleasing as she is sweet and highly competent, Alma must be proud that she has such a good successor.

It has been a great experience to share with two Board members our regular work. Ioanna and Aghieszka have brought fresh air and sparkling energy to the Symposium and it has been a beautiful experience to feel that we are not only respected and valued but also loved by our interlocutors who manifested true and sincere happiness to share time, hopes and laughs with us.

There is hope for PH, there is much work ahead!

With our warmest regards,

Ioanna, Agnieszka, Gergely and Juan

 

Footnote

The World Symposium on Pulmonary Hypertension (WSPH) is the most important scientific event in the world for this disease. Over the years it has marked the progresses in pulmonary hypertension science and has anticipated future developments. It was the first time ever that patients were involved in the task forces which prepare the WSPH between one edition and the other.