An overview of PC Project and an update of what is currently being accomplished was shared during the Aug 12 PC Project Town Hall
On Saturday, August 16 at 10am MT/12pm ET, PC Project held a Town Hall for our community!
Because so many patients (and their families) are new to PC Project, we invite you to watch (click below), learn more about who we are, what we do, and get the latest updates on what we’re accomplishing and what’s coming.
AI Summary of the August 2025 Town Hall
Introduction to PC Project
- PC Project was founded by the love of a grandmother, Mary, who encouraged action to be taken to address the needs of those affected by PC, a painful and debilitating skin disorder 04:56
- The organization is dedicated to finding effective treatments and a cure for PC through helping and connecting patients, empowering research, and partnering with industry, including pharmaceutical companies 03:00
- The organization has a small staff, including Janice, the executive director, and others, as well as a board of directors that includes Jack, Dave, Jim, Aaron, and several new members 07:02.
The PC Project Registry
- The registry is a diagnostic pathway for patients with Pachyonychia Congenita (PC), a rare condition. It includes patient-reported data, photos, and genetic testing for a diagnosis, with all cases reviewed and verified by a genetics team 09:52.
- The registry process costs approximately $1,000 per patient, from joining to receiving genetic testing results, and is a crucial part of the mission to provide accurate diagnoses and a supportive community 10:50.
- The registry has transformed the understanding of PC, revealing that it is more than just a “thick nail disorder” and has various complications and features, including painful calluses, infections, and neurovascular structures 14:23.
Reclassification of PC
- PC has been reclassified by gene name, with the condition now being referred to as part of the epidermal differentiation disorders, specifically Palmoplantar epidermal differentiation disorders or pEDDs 22:51
- The reclassification is a result of efforts by a group of experts, including those from the PC project, who have been working together to better understand and categorize skin diseases like PC, also known as palmoplantar keratoderma (PPKs) 21:16
Empowering Research
- The PC project’s patient registry is a valuable asset in connecting and helping patients, and has been instrumental in advancing research and understanding of the condition, with the project’s website and social media channels providing resources and support for patients and their caregivers 24:08
- Empowering research is a key focus, with a research agenda and numerous articles published, including those based on deidentified data from the registry 30:59
- An annual international PC consortium research symposium is hosted, which brings together researchers, pharma people, doctors, and others to collaborate and share knowledge 31:54
Research Collaboration
- Research is facilitated and collaboration happens throughout the year, with grants being funded to support researchers, including a current grant cycle for 2025 34:40
- Researchers are making progress in understanding the disease and potential treatments, including targeted PC research and basic and translational science 37:03
- There are several researchers working on PC, including a physician-scientist studying pain pathways, and another, who is investigating druggable associated targets 44:04.
- Researchers are exploring the use of EGFR inhibitors to treat PC, and clinical trials are being planned in the US and Europe 45:34.
- Gene editing is also being researched, with a two-year grant awarded for this purpose, but delivery of the edited genes to the correct cells is a significant challenge 46:49.
- Another researcher is working on proteomics, analyzing skin biopsies from PC patients to gain insights into the disease, and has made exciting discoveries with the help of collaborators 50:46.
- The project funded nearly $400,000 in research grants in 2023, with grant applications being rigorously reviewed and scored by the IPCC research committee members 54:17.
- The PC project is dedicated to finding treatments and a cure for PC, and may expand to include other rare and painful skin disorders, with the goal of opening doors for new treatments 01:01:38.
Conclusion and Call to Action
- The PC Project has been ongoing for 20 years, with the goal of finding a cure, and the concept of “pacers” is crucial to its success, similar to how trail runners use pacers to complete challenging courses 01:04:08.
- The project has had various pacers, including scientists like Sancy, who helped get the project started, and volunteers like Robin, who donate, fundraise, and participate in awareness campaigns 01:05:09.
- The project relies on its pacers, including donors, volunteers, and advocates, to increase its donor base and make progress towards finding a cure, with the ultimate goal of reaching the “top of the mountain” and making a difference in the lives of those affected by PC 01:06:42.
