plnfoundationna.com

The North American PLN Foundation is a patient-led organization dedicated to supporting people affected by the inherited PLN R14del mutation and connecting the global PLN community. Operating independently of the Dutch PLN Foundation while maintaining close ties and active collaboration, it focuses on reaching and informing North American carriers and families. The foundation raises awareness of PLN-related heart disease, explains the condition and its risks, and works to improve diagnosis through education about genetic testing, cardiac screening, and ongoing care with experienced cardiologists.

Its patient-support resources help individuals and families navigate the uncertainty of living with PLN, while information about family pedigrees and the PLN carrier registry supports community connection and awareness. The organization also advances scientific research by building a global research network and promoting progress toward treatments and, ultimately, a cure. Its website offers accessible information about the PLN gene, the R14del mutation, research, and current understanding of the disease