Kristin Anthony is president and founder of the PTEN Hamartoma Tumor Syndrome Foundation, a patient advocacy group of the Developmental Synaptopathies Consortium (DSC) that aims to find treatments or a cure for PTEN hamartoma tumor syndrome (PHTS). She is also the new chair of the Rare Diseases Clinical Research Network (RDCRN)’s Coalition of Patient Advocacy Groups (CPAG). Here, she shares her start in rare disease advocacy, exciting work with the PTEN Foundation and DSC, and goals as the CPAG chair.