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Organization Information

Pachyonychia Congenita Project


PC is a debilitating, rare skin disease that causes pain, blisters, calluses & cysts. PC Project serves patients & physicians/scientists with accurate information based on genetically confirmed cases to aid in diagnosis, research & treatment.

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Success Story

Rylee suffers from Pachyonychia Congenita, an ultra-rare skin disease so painful that walking and standing is difficult, and sometimes impossible. Rylee, constantly battles painful calluses and blisters on her feet. Currently, there is no effective treatment other than managing the pain, which Rylee does with the help of crutches, sometimes a wheelchair, and crawling.

PC Project is dedicated to serving patients like Rylee. As a member of the International PC Research Registry, her data – and the data of all patients who join the registry – has literally changed what researchers know about PC. PC Project actively collaborates with scientists, doctors, and industry to find effective treatments for PC.

PC Project helps patients find a diagnosis and offers support that increases quality of life. One patient who suffers from facial cysts wrote, “I would hide my face at 11 years old because I was so insecure and shy. Now at almost 24 years old I can 100% say you people have changed my life and I honestly don’t know if I’d be alive today if things were different.”

Another patient said, “Being part of PC Project has produced great changes in my life. I am 73 years old and until two years ago I did not know what was wrong with my feet. I knew they were ugly and caused tremendous pain and I never let anyone except my wife and boys see my feet. Giving it a name and knowing the cause has made it much easier to deal with. I can tell people what is wrong and why it’s wrong. I wish I knew all this when I was a kid. I think life would have been much easier. I still have to deal with the pain every day but at least I understand why it’s there. Thanks PC Project!”