Representatives of our pachyonychia congenita community exhibited and spoke at a special Patient Session
We extend our sincere thanks to the ESDR (European Society for Dermatological Research) for providing PC Project with a major platform to showcase our valuable collaboration between patients and researchers at a special patient session during their annual meeting in Lisbon, Portugal on September 4, 2024. Through a series of presentations, PC Project highlighted the way our patient community (and our registry) work hand in hand with our scientific community to accomplish our goals.
Representing PC Project were David Schwartz who gave opening and closing remarks, Tom and Tim Baker, who bravely wore flip flops to ease their pain and illustrate the daily challenges of living with PC and the blessings of being part of the International PC Research Registry, and Professor Edel O’Toole, a dedicated member of the PC Project Steering Committee and Genetics Team. Edel tirelessly supports our registry patients and presented on the most current PC research projects. See below for videos.
Additionally, the ESDR freely gave PC Project an exhibit table to spread awareness and network with researchers throughout the conference.
These types of opportunities are crucial for rare and painful skin conditions like PC, which often struggle to attract attention in the scientific and drug development communities. We appreciate the leaders of the ESDR for recognizing the importance of patient voices and for their continued support of patient advocacy organizations like PC Project at their annual meetings.
Some photos below were taken from the ESDR’s Facebook page, and others were provided by PC Project.
Videos for the special patient session at the ESDR.
