Some researchers who work on rare skin diseases have never met an actual patient with the condition. That’s why after our Epidermal Differentiation Disorders Symposium in Chicago, on the evening of May 12, 2026, we hosted a researcher networking dinner featuring a panel of EDD patients and family members sharing their lived experiences with a rare skin disorder.
Special thanks to PC Project’s own Jim Rittle and Jeff and Jaime Puro for speaking so openly about what it’s like to live with PC and/or to parent a child with PC. We are incredibly proud of them – and of everyone who participated on the panel.
Their stories brought a deeply human perspective to these disorders in a powerful and moving way. We later heard from many attendees that the panel inspired them to keep pushing forward in their work for our rare skin diseases.
