Post by Pachyonychia Congenita Project (PC Project)

We were so pleased to see Pachyonychia Congenita (PC) and related painful palmoplantar Epidermal Differentiation Disorders (pEDDs) have such a strong presence at the World Congress on Rare Skin Diseases in Versailles, France, July 1–3. Professor Edel O'Toole highlighted palmoplantar Epidermal Differentiation Disorders in a major presentation on the opening day of the congress. She also presented a poster on the pediatric features of children with PC on behalf of Dr. Rebecca McCarthy, who was simultaneously presenting the same research at a different conference in England. Another PC Project genetics team member, Dr. Stine Bjørn Gram, presented research on AAGAB-pEDD. (To date, our registry has provided a genetic diagnosis for 22 people with AAGAB-pEDD.) It was also exciting to see our friends at BioMendics, LLC, Karen McGuire and Aleesha M.cCormick, share their company's development pipeline, which includes a potential therapy for pEDDs such as PC. Seeing PC and pEDDs represented through scientific presentations, research posters, genetics, and industry development at a global congress is a reminder of how far our community has come. What began as a small patient organization is now helping shape research and future treatments around the world. #EndThePain #pEDDs #Pachyonychia