The “Guide to developing a Patient Journey”, published in Mars 2024 by EURORDIS, the European Rare Disease Organisation, provides step-by-step instructions, practical tips, and tools to aid patient representatives in developing Patient Journeys for their respective rare conditions.
What are Patient Journeys? Patient Journeys represent an innovative approach aimed at understanding the natural progression of a rare condition and the unique needs of patients by delving into their day-to-day experiences and perspectives. Through this patient-driven lens, they identify common unmet needs, addressing healthcare gaps, and improving health services by focusing on the daily life of individuals living with the condition. They offer a structured approach for patient representatives within European Reference Networks (ERNs) to engage with their communities, identifying common needs for each condition.
EURORDIS, along with patient representatives and clinicians in ERNs, are actively promoting the implementation of the Patient Journey approach across all rare conditions, empowering patients to shape care pathways based on their lived experiences.
Read more at this link on the EURORDIS website.
