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Pachyonychia Congenitia Project

Fighting for a cure. Connecting & helping patients. Empowering Research.

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Pharmaceutical Partners

Because PC Project’s main mission is to find meaningful treatments for PC patients, we invite industry to join us in advancing drug development for approved therapeutics.

WHY PARTNER WITH PC PROJECT?

  • We know WHO our patients are. We know WHERE our patients are. We know their exact mutation. When a company develops a drug that may benefit PC, they do not have to look far and wide for patients for clinical trials.
  • 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 dedicated to advocating on behalf of PC patients. Through our registry, we maintain regular contact with PC patients in more than 50 countries across the globe via phone, email, social media, virtual and in-person PC Patient Support Meetings, which annually bring PC patients, family members, and medical professionals together in the shared pursuit of effective treatments or a cure.

HOW CAN PC PROJECT CAN ASSIST A RESEARCHER OR INDUSTRY PARTNER?

  • Conduct or facilitate patient/family focus groups
  • Help to develop and deploy patient/family surveys to our patient community
  • Facilitate access to de-identified PC registry data
  • Provide 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, facilitate mutation-based screening and enrollment of studies through the International PC Research Registry
  • Provide feedback during clinical trials from the patient community to ensure the study runs smoothly
  • Make introductions to key leaders in the International PC Consortium
  • Include partners in our annual Patient Support Meetings and IPCC Symposiums

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

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PACHYONYCHIA CONGENITA PROJECT

P.O. Box 17850
Holladay, UT 84117

info@pachyonychia.org

801-987-8758

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