Fig. 1

The PROS Journey. This figure depicts milestones and common experiences for patients and caregivers across PROS disorders, although individual experiences will differ depending on the disorder and severity of disease. Further details on the PROS journey and specific journeys for K-T, CLOVES, and M-CM are provided in Additional file 1. CLOVES, congenital lipomatous overgrowth, vascular malformations, epidermal nevi, scoliosis/skeletal and spinal anomalies syndrome; ER, emergency room; K–T, Klippel–Trénaunay syndrome; M-CM, megalencephaly-capillary malformation syndrome; PIK3CA, phosphatidylinositol-4,5-bisphosphate 3-kinase catalytic subunit alpha; PROS, PIK3CA-related overgrowth spectrum; PTSD, post-traumatic stress disorder, QoL, quality of life