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Pachyonychia Congenitia Project

Fighting for a cure. Connecting & helping patients. Empowering Research.

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Overview For Family & Friends

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

Patient Stories

Videos & Presentations

Over the years PC Project has produced a number of videos & presentations. We hope these will help PCers know they are not alone—there is a PC community.

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PACHYONYCHIA CONGENITA PROJECT

P.O. Box 17850
Holladay, UT 84117

info@pachyonychia.org

801-987-8758

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