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Pachyonychia Congenitia Project

Fighting for a cure. Connecting & helping patients. Empowering Research.

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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.

PC Registry icon

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.

Vision

A Day when PC sufferers will live without excruciating pain, isolation, and embarrassment.

Mission

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.

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 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

Jack Padovano

Board Chair

PCer

    Aaron Klein

    Trustee

    Parent of PCer

      Kay Dee Holmes

      Trustee, Secretary

      Attorney

        Janice Schwartz

        Trustee

        PCer and parent of PCer

          Jason Hunter

          Trustee, Treasurer

          CPA

            C. David Hansen

            Trustee

            Dermatologist

              James Rittle

              Trustee

              PCer and parent of PCer

                PC Project Staff Members

                Janice Schwartz

                Executive Director

                  Joanne Udy

                  Bookkeeper

                    Holly Evans

                    International Patient Support Officer

                      Kara Moulton

                      Social Media Intern

                        PC Advocates

                        The PC Advocate Program was based on the premise that each PC patient has a powerful story to tell about their lives with PC…

                        Learn More PC Advocates

                        International Outreach

                        PC Project provides services throughout the world and currently serves patients in nearly 60 countries. No matter where you live, PC Project is here…

                        Learn More International Outreach

                        MOTTO

                        • Love, it’s in everything we do.
                        • PC Project: It’s all about love.

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                        PACHYONYCHIA CONGENITA PROJECT

                        P.O. Box 17850
                        Holladay, UT 84117

                        info@pachyonychia.org

                        801-987-8758

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                        There are many ways you can help improve the lives of those who suffer from Pachyonychia Congenita.

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