PH Patient Information Project

Pulmonary Hypertension (PH) is a rare and complex disease that requires clear, accessible, and reliable information for patients, caregivers, and healthcare providers. The PH Patient Information Project (PH-PIP) is a unique co-creation initiative bringing together patients, healthcare professionals, industry partners, and patient organizations to develop centralized, future-proof educational materials across language borders. In this presentation, you’ll learn: -Why unified PH educational resources are vital for patients and care teams -The collaborative process behind PH-PIP, supported by the Patient Expert Center and partners across Belgium -Phase I results, including the creation of a Patient Pathway (from early signs to end of treatment) and collection of over 80 resources into a central database -Identified priority materials: pre-diagnosis documents, patient roadmaps, starter kits for PAH and CTEPH, psychosocial support, integration resources, and end-of-life guidance -The roadmap for Phase II (2025–2026), focusing on base educational documents, rare PH patient roadmaps, support kits, and psychosocial tools Why this matters: -Patients gain clarity, confidence, and better disease understanding. -Healthcare providers benefit from reduced duplication, improved efficiency, and more meaningful patient dialogue. -Hospitals and patient organizations save resources while reinforcing their role in advancing quality care. -Industry and foundations share in a sustainable, collaborative effort that can scale beyond borders Learn more at: https://ph-ksp.com/