An Important Update About the Future of PC Project
We are sharing an important update about the future of PC Project and how we will communicate our work moving forward.
After many months of study, discussion, expert consultation, and careful consideration, we have approved a soft rebrand that better reflects both the evolving science and the broader community connected to our work.
First and most importantly:
- PC Project remains fully committed to the PC community.
- PC Project will continue to provide patient support programs and maintain the patient registry.
- PC Project will continue to advance research that leads to drug development and effective treatments for PC.
- In short, PC Project will continue to focus on improving the lives of people living with PC.
So what is changing?
PC Project is undergoing a soft rebrand.
For years, PC Project has supported individuals with related painful palmoplantar Epidermal Differentiation Disorders (pEDDs), previously referred to as palmoplantar keratodermas (PPKs), through our registry, educational resources, research efforts, and patient programs. Moving forward, we will more clearly communicate our support for the broader pEDDs community while remaining firmly rooted in our commitment to PC.
You may have already begun to see references to “PC and related painful pEDDs” in our communications, educational materials, scientific outreach, and other resources. These changes more accurately reflect both the work we are already doing and the broader scientific community engaged in this research.
For those individuals and families in our community who do not have a PC diagnosis but another pEDD, this change reflects something that is already true: you belong here.
Why are we doing this?
For over 20 years, PC Project has remained steadfast in its mission to support patients and families affected by Pachyonychia Congenita, advance research, and work toward effective treatments and ultimately a cure.
Over the past several years, researchers have increasingly recognized that PC exists within a broader family of related painful genetic skin disorders. As our understanding of these conditions has evolved, PC Project has already begun supporting individuals with related pEDDs through participation in our registry, educational resources, and community programs.
As scientific interest in the broader pEDDs family grew, and as more individuals with related conditions became part of our community, the Board of Directors commissioned a Mission Expansion Task Force, working in consultation with the Medical and Scientific Advisory Board, to recommend a path forward.
Throughout that process, we recognized that many individuals living with related painful pEDDs face challenges and features remarkably similar to those experienced by people with PC, yet often have far fewer resources, support options, and opportunities for connection available to them.
We also concluded that PC Project is uniquely positioned to serve this broader community with resources, education, and support while continuing our unwavering commitment to people living with PC. In addition, research conducted across these related conditions has the potential to generate insights and advances that benefit the broader pEDDs community, including people living with PC.
We believe this evolution will strengthen opportunities for collaboration, increase visibility among researchers and industry partners, and position PC Project for continued momentum in the years ahead.
What’s Next?
We know you may have questions, and we want to hear them.
To help explain this decision and discuss what it means for our community, we invite you to join us for a Town Hall meeting on July 21 at 2:00 pm ET. Please register here and receive a Zoom link:
During the Town Hall, members of the Board, Mission Expansion Task Force, Medical and Scientific Advisory Board, and staff will provide additional context, discuss what comes next, and answer your questions. If you cannot attend, register anyway and we will send you the recording.
Thank you for your continued trust, support, and partnership. Everything we do is guided by our commitment to improving the lives of patients and families affected by PC.
With gratitude,
Janice Schwartz
President & CEO, PC Patient
Jack Padovano
Board Chair, PC Patient
Nate Schwartz
Mission Expansion Task Force Chair, PC Patient
