PC Project Supports Patients with Painful PPK
As the International Pachyonychia Congenita Research Registry continues to grow, and because we are now offering genetic testing on a 49 gene panel, more and more patients are joining the registry who do not have PC, but have similar features to PC, namely painful palmoplantar keratoderma. Sometimes, without genetic testing it is impossible to distinguish between the various disorders.
If you have joined our registry and received a diagnosis through PC Project that is not PC, please stay with us. Our patient advocacy work includes you. And as more data is compiled about each mutation, researchers and physicians can better understand these unique and rare conditions and we will always notify you of research studies and opportunities for clinical trials.
Learn more and see our updated numbers of those in the registry without PC
All figures above are from patients who joined the PC registry thinking they might have PC and received a physician-verified genotyped diagnosis through PC Project. You can see that some have PC and some do not. But without genetic testing, we would not be able to give patients a correct diagnosis. If you have not joined the registry yet, please check it out and enroll today.
