Pachyonychia Congenita Project (PC Project) Email Format

Non-profit OrganizationsUtah, United States2-10 Employees

PC Project is a U.S. nonprofit based in Salt Lake City, Utah, focused on Pachyonychia Congenita (PC). It seeks to advance treatments and a potential cure by supporting patients, enabling research, and partnering with industry. The International Pachyonychia Congenita Research Registry (IPCRR) collects patient data online and offers free genetic testing to participants, with more than 2,500 individuals enrolled and ongoing access to personalized support.

PC Project sponsors the International PC Consortium to foster collaboration among scientists, physicians, and other professionals in PC research. De-identified registry data are shared for research, and the organization invites interested partners to join IPCC. In 2018, Palvella Therapeutics announced a collaboration with PC Project to initiate a Phase 2/3 study of PTX-022 for PC.

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