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Coalition of Skin Diseases Meeting

April 10, 2023

Gathering to learn from and help other patient advocacy groups

PC Project attended the Coalition of Skin Diseases Development Day meeting in conjunction with the American Academy of Dermatology Annual Meeting in New Orleans on May 18, 2023. PC Project met with other leaders of patient advocacy organizations for various skin diseases.

Our leader, Janice Schwartz, was invited to speak about the power and value of our International PC Research Registry. We are always happy to share our knowledge with others about why our patient registry is so important in helping patients receive a correct diagnosis, in understanding our disease, and advancing research for PC. Of course, our registry is powerful in drug development because we have a pool of willing, genetically confirmed patients ready to participate in clinical trials.

In turn, PC Project learned from other organizations and gathered tips and ideas on how to operate even more effectively!

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PACHYONYCHIA CONGENITA PROJECT

P.O. Box 17850
Holladay, UT 84117

info@pachyonychia.org

801-987-8758

EIN 68-0567493

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