Our Vision:
A day when PC and other pEDD sufferers will live without excruciating pain, isolation, and embarrassment.
Pachyonychia Congenita Project is a US-based charity dedicated to supporting individuals worldwide who are affected by Pachyonychia Congenita (PC), a rare and painful genetic skin disorder. We also collect data and provide support for those with other genetic skin conditions that cause painful palmoplantar Epidermal Differentiation Disorders (pEDDs). By engaging with patients, scientists, and physicians, we work to advance effective treatments and, ultimately, to find a cure.
Pachyonychia Congenita
is caused by a mutation or change in one of five keratin genes. Keratins help cells handle pressure and stretching. In PC, the mutations cause the keratin filaments to form incorrectly, resulting in painful calluses and blisters, nail dystrophy, cysts, and other characteristics. PC affects all races and genders equally.
Ways We Help
On our website you will find out what to do if you think you or someone you know has PC or a related pEDD, how to refer a patient to the registry if you are a medical professional, plus a wealth of other useful information.
There are no current approved treatments for PC and other pEDDs, but our patients and their loved ones connect through our friendly supportive community and share a range of tips and tools for managing symptoms.
All our work is funded through donations from our community. If you can help support us, please visit our Ways to Give pages to see how.
Identifying Pachyonychia Congenita
Could Your Pain Be From PC?
International Pachyonychia Congenita Research Registry
Our physician-verified Patient Registry is the only one like it in the world, with genetically diagnosed PC/pEDD patients in more than 60 countries. This is the only registry and patient advocacy community for people with PC and related painful pEDDs.
Registrants are provided with individualized support, free diagnostic genetic testing, if needed, and are notified of clinical trials for therapeutics and other activities such as online forums, patient support meetings, and more.
The registry allows us to collaborate with researchers and the pharmaceutical industry in the search for treatments and ultimately a cure for Pachyonychia Congenita and related palmoplantar Epidermal Differentiation Disorders.
Empowering Research
The symptoms of PC mean every day brings a different challenge, from being bullied to crawling at home. Since 2004, PC Project has sponsored the International Pachyonychia Congenita Consortium, a dedicated professional group focused on a collaborative effort to advance research, and genetic and drug discoveries to combat the debilitating pain of PC.
Latest PC News and Events
Events
News
Patient Stories
The experiences of individuals and families around the world are touching and illustrate the complexities and effects of living with Pachyonychia Congenita.
Our Community
We unite patients, researchers, physicians, and industry on a global level to support one another and advance research and drug development. No one is alone in the PC/pEDD world!
