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 and other rare genetic disorders with painful palmoplantar keratoderma.

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 and related genetic plamoplantar 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 related palmoplantar Epidermal Differentiation Disorders (pEDDs), and the support of many givers, has educated the world about PC and is on the path to effective treatments for patients.

Vision

A day when PC/pEDD sufferers will live without excruciating pain, isolation, and embarrassment.

Mission

PC Project leads a global effort to improve the lives of people living with Pachyonychia Congenita and related painful palmoplantar Epidermal Differentiation Disorders by connecting and supporting patients, advancing research, and partnering with industry to accelerate the development of effective treatments and cures.

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 and related painful pEDDs.
Love – We show our love by caring for and supporting all members of the PC Project 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/pEDDs.

Fighting for a Cure. Connecting & Helping Patients. Empowering Research. Partnering with Industry.

History

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 and pEDDs 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.