Holly Evans

Pachyonychia Congenita Project (PC Project)

Pachyonychia Congenita Project (www.pachyonychia.org) is a US 501(c)(3) is dedicated to finding effective treatments and a cure for Pachyonychia Congenita (PC), a painful, debilitating skin disorder, through helping and connecting patients, empowering research, and partnering with industry. The most common features of PC are painful palmar-plantar keratoderma, thickened nails, oral leukokeratosis, follicular hyperkeratosis, and cysts. These signs are dependent upon the specific mutation. For example, not all patients have nail dystrophy, oral leukokeratosis, or cysts. Almost all, however, will have painful plantar keratoderma by the time they reach adulthood. The International Pachyonychia Congenita Research Registry (IPCRR) gathers data from patients through an online registry and provides free genetic testing to those who join. Patients in the registry are offered individualized support and are notified of studies for PC treatments, advances in research, and activities such as online forums and patient support meetings. Currently, over 2100 patients are in the ever-growing registry. PC Project sponsors the International PC Consortium (IPCC) which facilitates collaboration among scientists, physicians, and other professionals interested in advancing research and translational therapeutics for PC. De-identified data from the registry is freely shared and available for research. PC Project invites all interested physicians, scientists and industry partners to join the IPCC, a special group, founded and fueled by love for these patients with severe unmet needs. Please partner with us to help achieve our vision, which is a day when those who suffer from PC will live without excruciating pain, isolation, and embarrassment.