Important NIH News for Our PC & pEDD Community and Research Partners
We are excited to share that the National Institutes of Health (NIH), through NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases), has released a new highlighted research topic focused on advancing research into the cause and treatment of rare skin diseases—and Pachyonychia Congenita (PC) is specifically listed as one of the diseases of interest.
This recognition represents an important moment for the PC Project community.
It means one of the world’s leading medical research agencies is signaling that rare skin diseases like PC and related palmoplantar Epidermal Differentiation Disorders (pEDDs) deserve focused scientific attention. The NIH is encouraging researchers to pursue projects that uncover disease mechanisms, identify biomarkers, build better models for drug screening, explore gene and cell therapies, and even repurpose FDA-approved drugs for rare skin disorders – all things we are pursuing through PC Project’s initiatives.
Inclusion in this NIAMS highlight signals growing awareness at the federal level of the urgent need for research and therapeutic development for rare skin diseases like PC.
This is exactly why our registry, international consortium, patient community, and research partnerships matter so much. When NIH highlights PC as a priority area, it opens the door for more investigators to bring fresh ideas, new technologies, and collaborative science to our field.
We are especially grateful to Dr. Peter Koch and his colleagues at NIAMS for their continued engagement with the PC Project community, including participation in our research meetings and ongoing dialogue with PC Project’s leadership and our scientific network. These relationships are critical to advancing meaningful progress.
We encourage you to explore the NIAMS announcement and share it within your scientific networks as we continue building momentum for research and awareness: https://grants.nih.gov/funding/find-a-fit-for-your-research/highlighted-topics/67
Together, we are moving closer to better understanding, better treatments, and a better future for those living with PC and related painful palmoplantar Epidermal Differentiation Disorders.
