![]() Maps were also developed for 3 specific conditions: Klippel–Trénaunay syndrome (K–T) congenital lipomatous overgrowth, vascular malformations, epidermal nevi, scoliosis/skeletal and spinal anomalies (CLOVES) syndrome and megalencephaly-capillary malformation syndrome (M-CM). Visual mapping of the PROS patient and family journey was developed to identify key personal health and system issues, and opportunities for improvements throughout patients’ lifespans. Key priority areas of need were identified, along with barriers to and potential enablers of quality care. Ethnographic research included 24 patients, caregivers, and/or advocates selected data from 223 patients were reviewed. Physician research included 94 PROS centers and other vascular anomaly centers throughout the United States and Europe. It was then validated with patients, caregivers, and patient advocates. The PROS patient journey was developed using a literature review, an ethnography study, health care professional (HCP) research, and social listening. ![]() Here, we aim to describe the PROS experience from the patients’ and caregivers’ points of view, from onset to diagnosis to treatment and support. PROS encompasses a broad spectrum of overlapping phenotypes (including overgrowth and vascular malformations) that vary significantly in their severity every case is unique, leading to different, complex experiences. ![]() PROS disorders are driven by somatic, gain-of-function mutations in PIK3CA that result in hyperactivation of the phosphatidylinositol-3-kinase (PI3K) signaling pathway.
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