Pachyonychia Congenita Project: Advancing Research and Drug Development through Collaboration [Published online in advanced , by J-STAGE]

[Advanced Published online The Keio Journal of Medicine, by J-STAGE]
<Title:> Pachyonychia Congenita Project: Advancing Research and Drug Development through Collaboration
<Author(s):> Janice N. Schwartz, Holly A. Evans, Edel A. O’toole, C. David Hansen
<Abstract:> Pachyonychia Congenita Project (PC Project) is an international patient advocacy organization dedicated to patients who suffer from pachyonychia congenita (PC). This condition is a painful and debilitating skin disorder caused by a mutation in one of five keratin genes: KRT6A, KRT6B, KRT6C, KRT16,or KRT17. Through two primary programs, namely the International Pachyonychia Congenita Consortium (IPCC) and the International Pachyonychia Congenita Research Registry (IPCRR), PC Project provides comprehensive patient support and diagnostics while uniting patients, researchers, physicians, and industry partners on a global level to advance research and drug development for meaningful treatments and, ultimately, a cure for PC.
<Keywords:> pachyonychia congenita, palmoplantar keratoderma, patient advocacy, blisters, pain
<URL:> https://www.jstage.jst.go.jp/article/kjm/advpub/0/advpub_2023-0015-IR/_html