Just Got My Genetic Testing, Now What?
Let us help you understand your genetic testing results and what you can do now
With a genetically confirmed diagnosis, you are empowered with medical knowledge about the exact nature of your condition.
Your genetic testing report will be a permanent part of your medical record that you can choose to share with whomever you wish, especially your local medical professionals.
You are also now part of a caring community – the PC community! – that is committed to finding effective treatments and a cure for PC by connecting and helping patients worldwide and by empowering research.
If you haven’t already, we invite you to continue to explore our website to learn about all the resources available to you and your family as you navigate life with PC. You will also discover all the ways PC Project is here to help.
You can learn more about your specific affected gene by exploring the pages below:
If genetic testing confirms that you do not have a PC mutation but have a similar condition, please stay with us! You are also an important part of our community. Learn more about other non-PC mutations in our registry.
Along with your genetic testing report — which confirms what type of mutation and PC type you have — you may click here to choose a brochure that you may wish to share with your doctor, or anyone else, to briefly explain about PC.
You can also explore resources and ideas about caring for PC, contributed by both medical professionals and other patients.
Videos & Presentations
Over the years PC Project has produced a number of videos & presentations. We invite you to explore this video section to find even more resources in our thriving community.
Another way to connect with our community is through our social media platforms. If you are on Facebook, we have a Pachyonychia Congenita Project page that you can like and follow.
We also have a private group for those who have joined the Registry, along with their loved ones, called Pachyonychia Congenita Patient Chat. This is a private group where individuals with PC share tips and experiences about living with PC. Information from this group may be de-identified and used on the website and for other educational purposes.
We also have a presence on other social media platforms, including Instagram, X (formerly Twitter), and LinkedIn under Pachyonychia Congenita.
In addition, we have a PC Newsletter that will keep you up to date on the latest news and events in the PC world. And if there are any special announcements about PC, we will always let you know. If you are not receiving the Newsletter, please sign up here.
Finally, we invite you to support PC Project at any time during your journey with us—by volunteering and/or making a financial contribution—to help us continue to do the work to fulfill our mission, including providing diagnostic genetic testing to all who come to us looking for answers.
We are thrilled that you are now part of our community and grateful that you have joined the International Pachyonychia Congenita Research Registry (IPCRR). It’s the single most important thing a patient can do to help us advance PC research.
If you received genetic testing from a source other than PC Project, we invite you to please join the confidential Patient Registry. Your participation helps PC research and drug development continue to move forward.
