Partner with us!

PC Project is committed to partnering with industry, academia, and clinicians to find effective treatments and a cure for Pachyonychia Congenita.

Thanks to all our partners, who have engaged in clinical trials, research and/or other efforts to enhance our understanding of PC and move us closer to a cure for PC.

Why Partner with PC Project?

  • By partnering with PC Project, industry and research partners gain access to the  International PC Research Registry (IPCRR), the world’s most robust collection of scientifically validated PC data.
  • PC Project serves as the only worldwide organization advocating on behalf of PC patients. We maintain regular contact with PC patients in more than 50 countries across the globe via phone, email, social media, and in-person Patient Support Meetings, which annually bring hundreds of PC patients, family members and medical professionals together in the shared pursuit of a cure or treatment.
  • PC Project has a long history of effective collaboration with innovators in academia and industry, including the following:


Palvella | Grunenthal | University of Dundee | Stanford University | Johns Hopkins University | TransDerm | Pfizer | University of California, San Francisco | University of Utah | Solihull Hospital Pain Management Clinic, UK | University of California, Davis | University of Saskatoon | Tel Aviv Sourasky Medical Center, Israel  | University of Michigan | Upsalla University | and many others – Thank you!

Examples of how PC Project can collaborate with pharmaceutical companies include:

  • Conducting or facilitating patient/family focus groups
  • Helping to develop and deploying patient/family surveys
  • Facilitating access to de-identified PC registry data
  • Providing genetic testing and genetic testing reports for patients in the International PC Research Registry who wish to participate in a clinical study
  • With patient permission, facilitating mutation-based screening and enrollment through the International PC Research Registry (IPCRR)
  • Providing feedback during clinical trials from the patient community to Facilitating introductions with leaders of the International PC Consortium (IPCC)

See PC Project’s Guidelines for Collaborating with Industry Partners for more information.

To partner with us, please complete the form below:

    PatientFamily MemberFriendPhysicianResearcherStudentOther

    PC News and Events

    Click here for PC Project News and Events webpage which includes announcements of upcoming events, important news information as well as links to all PC Patient NewsBrief issues and IPCC Newsletter issues.
    PC Consortium
    The International PC Consortium is a united effort by scientists, physicians and industry to develop effective therapeutics for PC patients.

    PC Patient Registry
    Learn why this international registry of PC patients is so crucial to the worldwide efforts to find treatments and a cure for PC