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 records 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 through genetic testing you were found to not have a PC mutation and 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 from 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 join our community is on 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 those with PC share tips and talk 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 forms of social media, including Instagram, Twitter, and LinkedIn under Pachyonychia Congenita.
In addition, we have have a PC Newsletter that will keep you up to date on the happenings 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 the work of providing diagnostic genetic testing to all who come to us looking for answers.
We are thrilled you are part of our group now and are thankful you have joined the International Pachyonychia Congenita Research Registry. It’s the single most important thing a patient can do to help us move research forward. .
If you received your genetic testing from a source other than PC Project, we invite you to please join the confidential Patient Registry to help PC research and drug development continue to move forward.
