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Pachyonychia Congenitia Project
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PACHYONYCHIA CONGENITIA PROJECT
OUR VISION:
A day when PC sufferers will live without excruciating pain, isolation, and
embarrassment.
Pachyonychia Congenita Project is a US based charity, dedicated to the
international support of people with Pachyonychia Congenita (PC), a rare and
painful genetic skin disorder. We engage with patients and professionals to find
effective treatments and a cure for PC.
Learn More
PACHYONYCHIA CONGENITA
is caused by a mutation or change in one of five keratin genes. Keratins help
cells handle pressure and stretching. In PC, the mutations cause the keratin
filaments to form incorrectly, resulting in painful calluses and blisters, nail
dystrophy, cysts, and other characteristics. PC affects all races and genders
equally.
Learn More
WAYS WE HELP
On our website you will find out what to do if you think you or someone you know
has PC, how to refer a patient to the registry if you are a medical
professional, plus a wealth of other useful information on Pachyonychia
Congenita.
There are no current approved treatments for PC, but our patients and their
loved ones connect through our friendly supportive community and share a range
of tips and tools for managing PC symptoms.
All our work is funded through donations from our community. If you can help
support us, please visit our Ways to Give pages to see how.
Donate
IDENTIFYING PACHYONYCHIA CONGENITA
COULD YOUR PAIN BE FROM PC?
Learn More
INTERNATIONAL PACHYONYCHIA CONGENITA RESEARCH REGISTRY
Our physician-verified Patient Registry is the only one like it in the world,
with genetically diagnosed PC patients in more than 53 countries. This is the
only registry and patient advocacy community for people with PC and other
conditions with painful PPK.
Registrants are provided with individualized support, free diagnostic genetic
testing, if needed, and are notified of clinical trials for therapeutics and
other activities such as online forums, patient support meetings, and more.
The registry allows us to collaborate with researchers and the pharmaceutical
industry in the search for treatments and ultimately a cure for Pachyonychia
Congenita and similar painful and rare PPK disorders.
Learn More
--------------------------------------------------------------------------------
1700+
Registry Patients
53+
Countries
EMPOWERING RESEARCH
The symptoms of PC mean every day brings a different challenge, from being
bullied to crawling at home. Since 2004, PC Project has sponsored the
International Pachyonychia Congenita Consortium, a dedicated professional group
focused on a collaborative effort to advance research, and genetic and drug
discoveries to combat the debilitating pain of PC.
Learn More
LATEST PC NEWS AND EVENTS
EVENTS
2024 INTERNATIONAL PACHYONYCHIA CONGENITA CONSORTIUM SYMPOSIUM &
DARIER/HAILEY-HAILEY DISEASE SYMPOSIUM
Announcing two synergistic scientific meetings joining forces to understand rare
skin disorders and advance…
2024 PATIENT SUPPORT MEETING
Join us in beautiful, historic Lisbon, Portugal for a gathering of patients,
physicians, and…
PC TOWN HALL MARCH 23, 2024
A wonderful gathering with questions from our global PC community answered by
our PC…
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NEWS
SELECTED PUBLICATIONS
There are over 700 articles available in the Published Research Articles section
of the…
RARE DISEASE DAY
Thursday, February 29 is Rare Disease Day. It’s a time when people all over…
MY PC VALENTINE
Who is your PC Valentine? Share the love through the #MyPCValentine campaign and
let…
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PC STORIES
The experiences of individuals and families around the world are touching and
illustrate the complexities and effects of living with Pachyonychia Congenita.
Read Stories
OUR COMMUNITY
We unite patients, researchers, physicians, and industry on a global level to
support one another and advance research and drug development. No one is alone
in the PC world!
> Being able to research exactly what I have and understand it better is such a
> relief. I go around educating people all the time. Especially doctors.
> Knowing you are not alone is a big help. Sharing coping strategies is a big
> help. Others have tried lots of things and some help more than others, but
> it’s good to learn how to get through each day when some days the pain is
> unbearable, and knowing others manage to get through it.
> Advice and support from people who can empathize are the small things that
> make a huge difference, and it also gives people the priceless gift of hope.
> As cliche as it is, people certainly have a lot to gain and absolutely nothing
> to lose from joining the registry
FOOTER
PACHYONYCHIA CONGENITA PROJECT
P.O. Box 17850
Holladay, UT 84117
info@pachyonychia.org
801-987-8758
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