A day when PC sufferers will live without excruciating pain, isolation, and embarrassment.
Pachyonychia Congenita Project is a US based charity, dedicated to the international support of people with Pachyonychia Congenita (PC), a rare and painful genetic skin disorder. We engage with patients and professionals to find effective treatments and a cure for PC.
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, how to refer a patient to the registry if you are a medical professional, plus a wealth of other useful information on Pachyonychia Congenita.
There are no current approved treatments for PC, but our patients and their loved ones connect through our friendly supportive community and share a range of tips and tools for managing PC 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 patients in more than 53 countries. This is the only registry and patient advocacy community for people with PC and other conditions with painful PPK.
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 similar painful and rare PPK disorders.
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
2023 IPCC Symposium at ISID
With excellent presentations, a room packed with researchers, and many more standing in the…
Special PPK Session at AAD Featuring PC Dermatologists
At the 2023 American Academy of Dermatology (AAD) Association Annual Meeting, PC and other…
2023 New Orleans Patient Support Meeting
March 15-17, 2023Hilton Garden Inn New Orleans Convention Center PC patients and their loved…
PC Awareness – June 2023
Every June, those of us living with Pachyonychia Congenita (PC) – plus our families…
PCers Needed to Answer 4 Questions
Every summer, the American Academy of Dermatology (AAD) sponsors five (5) one-week sessions of…
The experiences of individuals and families around the world are touching and illustrate the complexities and effects of living with Pachyonychia Congenita.
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 world!
Knowing you are not alone is a big help. Sharing coping strategies is a big help. Others have tried lots of things and some help more than others, but it’s good to learn how to get through each day when some days the pain is unbearable, and knowing others manage to get through it.
Advice and support from people who can empathize are the small things that make a huge difference, and it also gives people the priceless gift of hope. As cliche as it is, people certainly have a lot to gain and absolutely nothing to lose from joining the registry
Being able to research exactly what I have and understand it better is such a relief. I go around educating people all the time. Especially doctors.