Representatives of the PHA Europe Juan Fuertes Guillén, Agnieszka Bartosiewicz, Ioanna Alissandratou and Gergo Meszaros took part in the World Symposium of Pulmonary Hypertension in Nice. During the Symposium, many successful goals were achieved, including the involvement of new grantors. A dialogue has been initiated for further collaboration with the PHA USA, the Latin Community and PHA Aware under the World PH Day. There is also the intention to create a new tool for measuring the quality of life initiated by the community of patients. It will create a standard universal tool that will help you measure the results and differences that arise in different degrees of access throughout the world. This will be a key element for guiding very strong data to implement all procedures in all countries. This is the first case where the community of patients is involved in joint projects that go beyond the exchange of views and moral sentiment.
Scientific sphere also has some news. Genetics has advanced tremendously, fundamental research
has overcome the limits of pharmaceutical-funded research, and there is a hope that PH will feel
profound and meaningful achievements in the near future. It was decided to submit a proposal to
push genetic testing as a standard procedure in clinical practice. This will significantly change the
effectiveness of the treatment, and patients will have a very important chance to prevent
deterioration and avoid treatment failure.
We thank Juan Fuertes Guillén, Agnieszka Bartosiewicz, Ioanna Alissandratou, Gergo Meszaros for
protecting and representing the interests of PH patients. We especially appreciate and thank Pisana
Ferrari for her titanic work in the preparation of the World Symposium, being the head of one of the
13 target groups – Patient Perspective, as well as the respected voice of patients with PH in Europe.