Pachyonychia Congenita Project

Pachyonychia Congenita Project is a US-based 501(c)(3) nonprofit organization dedicated to finding treatments and a cure for Pachyonychia Congenita (PC), a painful skin disorder. Headquartered in Holladay, Utah, the organization employs 5-9 individuals. Pachyonychia Congenita Project focuses on supporting patients, empowering research, and collaborating with industry partners. They operate the International Pachyonychia Congenita Research Registry (IPCRR), which gathers patient data, provides genetic testing, and connects individuals with support resources, including online forums and patient meetings. The registry currently encompasses over 2,500 patients. Additionally, the organization sponsors the International PC Consortium (IPCC), which fosters collaboration among scientists, physicians, and industry professionals interested in advancing research and therapeutic solutions for PC. The IPCC provides access to de-identified patient data from the registry to facilitate research efforts. For further information or to learn about partnership opportunities, please visit www.pachyonychia.org.