Registry forms available online

The registry forms are available online.

Click Here

for both new registrations and to update your data. Your participation really matters!

  1. Log in or register to fill out the online questionnaire and consent form. Each patient will need their own login. If needed, the same email address can be used with different peoples names.
  2. Provide the photos.
  3. Connect with PC Project.
  4. If referred for genetic testing, you will receive a sample collection kit for saliva collection and free genetic testing (a $2500 value).

“I felt so alone, and different for so long, it’s a multitude of emotions when I read posts from other PCers. It’s like I’m not alone anymore, and I feel less like a medical mystery/outcast. And being able to say with 100% certainty what I have is amazing.”

“The PC registry gave me the answer to why my feet were not like other people’s. It wasn’t wearing the wrong shoes as a child. It is a genetic condition and being registered by the PC Project gives answers and support when talking to our doctors and others around us about PC.”

“It gave my disease a name! It gives me a place to go to for support.” 

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.
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