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 dedicated to advocating on behalf of PC patients. Through our registry, we maintain regular contact with PC patients in more than 60 countries across the globe via phone, email, social media, and in-person PC Patient Support Meetings, which annually brings 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 (IPCRR)
- Provide feedback during clinical trials from the patient community
- Make introductions to key leaders in the International PC Consortium (IPCC)
- 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.
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!
To talk with us about a partnership, please contact us at info@pachyonychia.org or complete the form below:
