In honour of Rare Disease Day we’re excited to unveil the Pulmonary Hypertension Expert Patient Academy (PHEPA) a groundbreaking collaboration between Alliance for Pulmonary Hypertension and PHA Europe, officially endorsed by the European Reference Network for Rare Respiratory Diseases (ERN-LUNG), on February 27th.
This webinar showcased how this innovative program, whose main focus is on the rare forms of pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension, will empower patient advocates across Europe with comprehensive, expert-reviewed education.
Key points
- Collaborative effort
- Fills a clear education gap
- Written by patients for patients
- Simple understandable language
- Reviewed by international experts
- Practical and actionable
- Free and accessible
Project Rationale
Patient voices are increasingly essential in advancing pulmonary hypertension care, with regulatory agencies (European Medicines Agency, EMA), HTA bodies, scientific societies, and the health care industry actively seeking patient expert input in guideline development, clinical trials, and policy-making. However, effective contribution in these technical environments requires specialized knowledge and skills.
While excellent general advocacy training programs exist (EUPATI, EPAP, EURORDIS Summer School), none address the unique landscape of pulmonary hypertension. The Pulmonary Hypertension Expert Patient Academy aims to fill this gap, providing comprehensive, disease-specific training that prepares advocates to contribute confidently alongside professionals and policymakers. Standardized curriculum and certification will ensure quality and provide formal recognition of patient expertise across Europe.
Project Status
The curriculum outline is complete, and content development is underway by a Task Force comprised of patients and patient advocates. The Scientific Committees of the two organizations (PHA Europe and the Alliance for PH) will review the curriculum to ensure medical rigor. While we aim to complete the Academy in 2026, the timeline may extend depending on partnership coordination.
