Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management

RHU DESTINATION 2024 is a hospital and university research funded by the French government. It is led by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Reference Centre, and coordinated by the Assistance Publique-Hôpitaux de Paris (Bicêtre Hospital). Partners include the University of Paris-Saclay, Inserm, Marie Lannelongue Hospital, as well as three private companies.

The project is titled: “Screening, Evaluation, and Treatment of Chronic Thromboembolic Pulmonary Hypertension (Destination 2024)”.

The objective of the DESTINATION 2024 project (€5 million) was to improve all stages of Chronic Thromboembolic Pulmonary Hypertension management (early diagnosis, severity assessment, treatment). In France, at least 35,000 cases of pulmonary embolism are treated each year. In 1 to 3% of survivors the persistence of a scarring pulmonary arterial obstruction associated with abnormalities in small pulmonary vessels can lead to Chronic Thromboembolic Pulmonary Hypertension (CTEPH), causing disability, heart failure, and premature death in the absence of treatment.

Pisana Ferrari was asked to write about Chronic Thromboembolic Pulmonary Hypertension management from a patient perspective for the 2023 edition of the e-newsletter of DESTINATION 2024.

Pisana announced this initiative on PH International, an online platform which connects pulmonary hypertension patient associations around the world, set up by the Pulmonary Hypertension Association of the USA, the PHA, and asked if there were volunteers willing to share their experience with the condition. She has included snippets from fifteen of the testimonials she received from patients in the final article: two from Ukraine, three from Spain, one from Italy, one from a Senegalese citizen residing in Italy, two from Canada, one each from Turkey, Mexico and Singapore. Very different experiences but many common challenges. Pisana extends her warmest thanks to all the patients who contributed to this article.

The article was recently been published in the Destination RHU 2024 newsletter and officially launched at an event in Paris on October 4th titled “A Roadmap to a Cure For CTEPH”. Check out page 5-6-7 for Pisana’s article.

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