June 2019 PC Awareness Campaign 

What makes us strong? Our community of more than 1,000 individuals living with PC, loved ones, and friends who find common purpose and support via PC Project.  Together, we are raising awareness, connecting and helping patients, empowering research, and fighting for a cure. 

Together, we are #StrongerThanPC.

June is Pachyonychia Congenita Awareness Month. It’s the one month every year where we join together as a community to raise awareness of PC and show the world how strongly we want effective treatments and a cure for this painful condition.

Over the next several weeks, we’ll be making a simple declaration to the world:


For many of us living with Pachyonychia Congenita, we’ve only recently discovered that community can make us stronger. PC is a very isolating condition. That makes even talking about PC very uncomfortable.

We worry about embarrassment, shame, people treating us differently, even concern that we may lose a relationship over something that we clearly had (and have) no control over.

Only through the help of the PC Project and people like YOU have I learned how to be *stronger than PC* and talk about my condition and the ways it impacts my life.

So, are we stronger than PC? YES! Together, we can do so much!

Participating in PC Awareness Month is easy. And no matter how you choose to get involved with PC Project, we can all do something to make a difference.

Need ideas? Consider telling three people about PC and the PC Project.  If you have PC, join the patient registry.  If you haven’t given in 2019, make a contribution to PC Project and ask others to donate.  If you’ve already made a donation, consider increasing your support during PC Awareness Month.

Many of you have asked how you can increase your impact on PC Project this month. Here are three easy tips:

  • BE the change. You are the CEO for PC Awareness in your local area. So choose an action or plan an event that speaks to you, your family and friends.
  • SHARE your action/event: Let us know how you’re making a difference during PC Awareness Month! Tag us on the PC Project Facebook page @pachyonychia or send an email to And don’t forget to share your action or event with your local news and on social media. Events around the world (large and small) get Pachyonychia Congenita trending as a news story, which helps us  meet our awareness-building goals.
  • REPORT your success: Did you pull off something amazing? Send us an email at telling us what you did! We will share these stories and help inspire others to step up and make a difference.

Need help? Send an email to and let us know.

More to come!


P.S.  Remember that our PC Project community may be small, but we have great strength in numbers.  Any action/event you lead this month will help us make this June our most effective PC Awareness Month ever.

Suggested social media hashtags: #StrongerThanPC #PCAwareness #PCAwarenessMonth #PachyonychiaCongenita #LearnAboutPC

I’m not really sure anyone with PC truly gets over the fear of sharing with others that they have PC and what it means for their everyday life. For me, there’s always that lingering doubt that someone may not like me or somehow treat me differently because of my PC.

But because PC is so rare, most people have never heard of it. So if it’s not me educating others about my condition, then who’s going to do it? And who better qualified to share what life is like with PC?

 I persevere and choose to share my PC story because I believe that together we are stronger than PC.

My PC story is sometimes difficult to share, but two things stand out that I always try to cue others into: First, I have to constantly be aware of the compromises and trade-offs I need to make when choosing activities. Second, regardless of what I do in any given day, the fact is there will always be that relentless PC pain.

Today, in honor of PC Awareness Month, I ask you to do two things to help all of us who are living with Pachyonychia Congenita.

  1. Share your PC story face-to-face with someone you’ve never told.
  2. Share your PC story (or your in-person experience) with your friends and followers on social media with the hashtags #StrongerThanPC, #PCAwarenessMonth, #PachyonychiaCongenita, and #LearnAboutPC.

PC Project staff would then appreciate you sharing your experiences with them, either on one of the PC social media platforms, or by emailing them at

Let’s build more awareness and understanding of this condition through courage and our willingness to share.

All My Best,


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