Overview For Family & Friends

Video Archive

The Video Archive has dozens of presentations on a variety of topics related to PC. Click Here to select a topic of interest.

PC News and Events

Click the link above for News and Events as well as copies of all PC Patient NewsBrief issues and IPCC Newsletters.

IPCRR Patient Registry Data

Patients in the IPCRR are helping physicians and scientists discover more about PC. This research is leading to the develoopment of treatments for PC. Data from the IPCRR patient registry is available on the PC Data tab including the location of PC patients by country and state, listings of all of the genes and mutations linked to Pachyonychia Congenita, a summary of the registry data and other helpful charts and graphs.

Encourage every family member to join the Patient Registry or update their information

Welcome! You are so important to those with PC.

You provide the support and encouragement that every PC patient needs. You are the means of helping PCers shape a positive self-image and gain self-confidence. You can be active in creating awareness of PC in your school, neighborhood and community. You are there to notice the little things that make a big difference for a PCer on a daily basis.

While we at PC Project care about every PC patient everywhere in the world, only you, the family and friends of individual patients, can be there moment-to-moment. We appreciate you and recognize your contributions.

We urge you to explore all sections of the website and invite you to be an active partner with PC Project as we work together to help those you love manage PC and enjoy life to the fullest.

You are the best...

We have often exclaimed 'those with PC have the best marriage partners!' or 'those with PC have such amazing parents.' We want to share what we have observed.

As we tried to make a list of specific examples, we realized that what we observe is that the best PC partners and friends are 'just there.' They do things without anyone noticing. There is a good communication 'behind the scenes' so that they know when and how to help. The PCer feels at ease in saying 'can you...' without much discussion. We realized that our inability to define specifics was the answer -- the best partners and friends for PCers are 'simply there!'

We've included a number of specific suggestions in the 'how you can help those with PC' section.

Learn more about PC from patient stories