Overview For PC Patients

Focus on PC Patients

The many parts and pieces of this new website are designed to empower and educate patients by providing accurate up-to-date information as well as support. We want to give hope knowing that many leading scientists around the world are collaborating in this quest to develop effective treatments for the ultra rare disorder known as Pachyonychia Congenita.

We invite you to visit the website often to read new patient stories, to check on events and news, to access recent publications and learn of new developments. Explore the entire website, which is designed as a resource to provide easy access to information on Pachyonychia Congenita for you, for your family and friends, and for professionals who may be providing care.

PC News and Events

Click here for PC Project News and Events webpage which includes announcements of upcoming events, important news information as well as links to all PC Patient NewsBrief issues and IPCC Newsletter issues.
 

Patient Support Meetings

Click here for Patient Support Meeting information
 

IPCRR Patient Registry Data

Patients in the IPCRR are helping physicians and scientists discover more about PC. This research is leading to the develoopment of treatments for PC. Data from the IPCRR patient registry is available on the PC Data tab including the location of PC patients by country and state, listings of all of the genes and mutations linked to Pachyonychia Congenita, a summary of the registry data and other helpful charts and graphs.

Join the Patient Registry or update your information

PC Patient Registry
Learn why this international registry of PC patients is so crucial to the worldwide efforts to find treatments and a cure for PC

videoandpresentations