The Power of Genetic Testing!

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

Article by Dr. Neil Rajan is a Consultant Dermatologist at Newcastle’s Royal Victoria Infirmary, Senior Lecturer at Newcastle University and Joint Lead, with Professor Edel O’Toole, of Genomics England’s Skin Clinical Interpretation Partnership.

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.

Tom’s Story (second video in article)
Alain’s Story (first video in article)

PC News and Events

Click here for PC Project News and Events webpage which includes announcements of upcoming events, important news information as well as links to all PC Patient NewsBrief issues and IPCC Newsletter issues.
PC Patient Registry
Learn why this international registry of PC patients is so crucial to the worldwide efforts to find treatments and a cure for PC