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Blisters, Cysts, Keratoderma, Nail dystrophy, Pachyonychia, Partnership



  1. Schwartz, Mary E.
  2. Zimmerman, Gail M.
  3. Smith, Frances
  4. Sprecher, Eli


ABSTRACT: A rare disease like pachyonychia congenita (PC) poses barriers to the patient, medical professional, and scientist. The patient has challenges connecting to information, the medical professional has challenges connecting to patient experience, and the scientist has challenges connecting to a sufficient number of patients to do meaningful research. Recent collaboration between these groups has transformed our understanding of PC and its symptoms and method of diagnosis. PC Project is at the center of this collaboration and is providing new insights for the dermatologist and dermatology nurse, enabling better diagnosis of PC and counseling of a PC patient. The PC patient, medical professional, and scientist have an international advocate in PC Project, a patient-led, nonprofit project committed to connecting all these communities to the tools they need to improve the lives of those living with PC.