One of the greatest services PC Project provides for patients is a correct diagnosis. This is empowering and life-changing for patients to have a name for their condition.
Thanks to Dr. Neil Rajan and Genomics England for highlighting the need for diagnostic genetic testing in the article: We need to talk about zebras
And extra special thanks to PC advocate, Tom Baker, for sharing his story by video in the article. Both Tom and Alan Bentley (see videos below) are patients who joined the International Pachyonychia Congenita Research Registry and received free genetic testing through PC Project. Although Alan doesn’t have PC, he now knows what he has because of PC Project. What’s more, PC and Olmsted share similar pathways which makes treatments for one condition potentially helpful to the other.
And whether you have PC or not, if you have found a diagnosis through PC Project, we welcome you in our community because of the commonalities of our diseases.