About PC Project
We connect patients, researchers, physicians, and industry partners in a united and global effort to help those who suffer from the debilitating effects of PC.
Recognized since 2004 as a public charity in the USA, we engage with patients and professionals to offer diagnostic genetic testing, support to patients and their loved ones, and partner with scientists and industry to advance PC research and drug development.
Pachyonychia Congenita is one of nearly 7,000 rare diseases, 2,000–3,000 of which are rare genetic skin diseases. Over the past 20 years, PC Project, with the work of our international consortium of professionals, the participation of genetically confirmed patients in the only physician-verified registry for PC, and the support of many givers, has educated the world about PC and is on the path to effective treatments for patients.
A Day when PC sufferers will live without excruciating pain, isolation, and embarrassment.
PC Project is dedicated to finding effective treatments and a cure for Pachyonychia Congenita, a painful, debilitating skin disorder, through helping and connecting patients, empowering research, and partnering with industry.
Everything we do is aligned with our core values:
- Hope – We hope for a future with treatments that minimize pain, increase mobility, and eventually cure PC.
- Love – We show our love by caring for and supporting all members of the PC community.
- Empower – We empower research and we empower patients to become their own advocates to successfully navigate living with this painful, rare disease.
- Collaborate – We collaborate with physicians, scientists, industry, and patients across the world to advance research and drug development for meaningful treatments and ultimately a cure for PC.
Fighting for a Cure. Connecting & Helping Patients. Empowering Research. Partnering with Industry.
PC Project came to fruition due to the love and commitment of Mary Schwartz, a grandmother who was determined to make positive changes for those with PC, including her own family members. Since then, PC Project has grown and developed into an internationally recognized center of excellence in all things PC related. Read about how PC Project started.
All our work is funded by donations from our community. Find out how you can support us on our Ways To Give page.
PC Project Board of Trustees
Parent of PCer
Kay Dee Holmes
PCer and parent of PCer
C. David Hansen
PCer and parent of PCer
PC Project Staff Members
International Patient Support Officer
Social Media Intern
The PC Advocate Program was based on the premise that each PC patient has a powerful story to tell about their lives with PC…
PC Project provides services throughout the world and currently serves patients in nearly 60 countries. No matter where you live, PC Project is here…
- Love, it’s in everything we do.
- PC Project: It’s all about love.