For Professionals
Refer a patient, join the professional consortium, find the latest research, or partner with us.
PC Project collaborates with industry, researchers, and clinicians to find effective treatments and a cure for Pachyonychia Congenita.
Refer a patient
PC Project is the only organization in the world to hold a patient database for PC and similar rare skin diseases and a Physician Verified Patient Registry. We have an expert genetics team who meets monthly throughout the year to review registry cases. We take referrals from all medical professionals and our team is available to review and discuss cases with you. Learn more about how to make a patient referral.
International Pachyonychia Congenita Research Registry (IPCRR)
Join the patient registry now! Be part of the solution for finding treatments and eventually a cure for PC! Registrants are offered free diagnostic genetic testing if needed, individualized support, and notified of studies for PC treatments and other activities such as online forums, patient support meetings, and more.
Join the International Pachyonychia Congenita Consortium
Sponsored by PC Project, the IPCC is a group of scientists and physicians and drug developers who join in collaborative research efforts, patient care, and genetic and drug discoveries. As a result of the IPCC (and with access to the International PC Research Registry), numerous articles have been published and many studies have been conducted. Read more about the IPCC or contact us to join.
Research
The first PC gene, KRT16, was identified and published in 1995 by W. H. Irwin McLean. In that same year, the KRT6A gene was published by Paul Bowden. Since that time over 120 specific genetic mutations have been identified for PC. Full text of over 700 publications related to PC are available in the Published Research Articles. PC Project is always eager to collaborate on research papers and share de-identified International PC Research Registry (IPCRR) data.
Research Articles
Free access to over 700 full-text articles on Pachyonychia Congenita, related disorders, and research.
Partner With Us
PC Project empowers research by collaborating with industry, researchers, and clinicians to find effective treatments and a cure for Pachyonychia Congenita. We also hold a large number of resources for the medical, scientific, and drug development communities.
Data from the IPCRR patient registry is available on the PC Data page including listings of all of the genes and mutations linked to Pachyonychia Congenita, a summary of the registry data and other helpful charts and graphs. Copies of all IPCC Newsletters are available on the News and Events page as well as announcements of upcoming meetings and news articles.
Videos & Presentations
Over the years PC Project has produced a number of videos & presentations. We hope these will help PCers know they are not alone—there is a PC community.
