Join Dr. Bryan Sisk and Dr. Anna Kerr for an information session on Saturday June 26th from 1-2:30 EST to learn about the VACOM research study. The goal of this project is to learn about communication and care experiences from caregivers and patients affected by vascular anomalies. This study is open to adult patients and caregivers over the age of 18, who live in the United States.
Vascular anomalies are a group of rare disorders that can be disfiguring, painful, and even life-threatening. Families and patients affected by vascular anomalies have described multiple barriers to care and communication, such as difficulty accessing care from experts, persistent uncertainty about the diagnosis, and long-term consequences, insufficient information to guide decisions, and the necessity of persistent parental advocacy to ensure the child receives adequate medical care. However, no researchers have explored or categorized the needs or barriers experienced by these families.