PC Project, represented by Pierre Coulombe and Janice Schwartz, met with 14 NIAMS, and NCATS directors from the NIH on July 23, 2025 to discuss:
- PC and the other palmoplantar epidermal differentiation disorders (pEDDs) we represent and the debilitating daily pain patients live with
- What PC Project is doing to advance research for these diseases, including our smaller grants to provide researchers with data to then get larger grants from NIH
- How PC and PC Project are a model; as discoveries are found for one rare skin disease, they can potentially help many more
- How funding rare disease science can impact much more than a single disorder and the way rare diseases are scored
- How PC Project can partner with NIAMS and NCATS to better serve patients by advancing research and finding effective treatments
We were impressed by the genuine care shown by the NIAMS and NCATS directors for patients who suffer daily from debilitating pain, as well as their willingness to collaborate and explore solutions together.
Our robust discussion included the following presentations:
Dr. Lindsey Criswell, M.D., M.P.H., D.Sc., NIAMS director, shared information on NIAMS’ current programs, activities, and strategic planning that relate directly to PC Project’s goals.
Janice Schwartz, executive director of PC Project, talked about what PC Project is doing to advance research and drug development for rare skin diseases with painful palmoplantar keratodermas through two programs – and the challenges we face.
- International PC Consortium, a collaborative group of researchers and physicians, including an annual scientific symposium with the Society for Investigative Dermatology and a grant program to incentivize research.
Limitations: How do we get more researchers to choose to study PC and other pEDDs? How can we get NIH grant callouts to include our diseases? - International PC Research Registry, a physician verified, patient reported registry with clinical and genetic data for diagnostics and understanding/researching the diseases, especially pEDDs.
Limitations: There are over 50+ genetic pEDDs, including PC, most living with no diagnosis, no treatments, no research, and no PC Project. Many come to us for answers and community. How do we open our doors to all these patients and deal with this huge unmet need?
Pierre Coulombe, PhD, one of our distinguished PC researchers from the University of Michigan, and the leader of the International PC Consortium Research Committee, spoke in depth of our needs, how PC and PC Project are a model for other skin diseases, how rare disease research has applications for other rare and even common diseases, and should be scored accordingly when it comes to grants. Pierre was also able to speak to the science aspects during the group discussion.
Much of the discussion came from the following questions:
- How can PC Project work with NIAMS and NCATS to advance research in our disease space for the over 50 rare skin diseases we represent with palmoplantar epidermal differentiation disorders?
- What opportunities are there for PC/PPK researchers to collaborate with NIAMS and/or NCATS?
- In terms of advancing research in this area, how can PC Project move the needle forward? What can PC Project do to inspire/encourage researchers to apply for NIAMS and/or NCATS grants?
- Based on the NIAMS and NCATS strategic plans, are there areas of synergy or opportunities for PC Project to assist or align goals?
This meeting exceeded our expectations. We’re grateful to be on the minds of NIH directors and look forward to continuing our partnership as we work together on behalf of the patients with rare skin diseases we all serve.
