Stichting Pulmonale Hypertensie / PH Association the Netherlands heeft dit gerepost
Collaboration that Reaches the Real World Recently Louise Bouman - van der Waal, Chair of Stichting Pulmonale Hypertensie / PH Association the Netherlands, had the opportunity to speak at a satellite event at the European Respiratory Society Annual Congress on behalf of the Alliance for Pulmonary Hypertension, of which she is a Board Member. She shared how collaboration between patient associations and industry can make clinical trials more inclusive and meaningful. Too often, clinical studies miss important groups of people: older patients, those with overlapping conditions, or individuals outside major hospital networks. As a result, the data doesn’t always reflect real life. Patient associations can change that! We bring trust, clear communication, and a direct connection to the patient community — helping reach people who might otherwise never hear about a study. In a recent collaboration, we co-created patient-friendly trial materials, translated complex information into plain language, and shared it through trusted patient channels. The outcome? Better understanding, stronger trust, and broader reach. This experience showed what’s possible when we work side by side: 🔹 Equal partnership 🔹 Accessible, patient-centered communication 🔹 Real-world representation If we want research that truly reflects the lives of those living with pulmonary hypertension, collaboration isn’t optional — it’s essential. #PulmonaryHypertension #PatientEngagement #ClinicalTrials #Collaboration #HealthEquity #ERS2025 #RareDiseases #GossamerBio