The patient journey is a visual, educational tool describing the experiences of patients living with a rare disease. Made by patients, the patient journey gives the opportunity for health care professionals and patients to identify gaps in care and adapt care pathways. Patient journeys are also useful resources for patients’ families, non-specialist clinicians, and the general public to understand the care needs of patients living with a rare immunological disease.
Within ERN RITA, patients representatives have worked hard on creating patient journeys for people living with a rare immunological disorder. Today, we are happy to share the first patient journey of a patient with Common Variable Immune Deficiency (CVID). Patient journeys for autoimmune diseases, autoinflammatory disorders and pediatric rheumatology diseases are in preparation and will be shared soon.
Huge congratulations to RITA’s patient representatives for launching such useful resources!