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Edel O’Toole is a clinical academic and Centre Lead of the Centre for Cell Biology and Cutaneous Research, Blizard Institute, Barts and the London School of Medicine and Dentistry with an active research group working on rare and common genetic skin disease biology and is also an honorary consultant dermatologist at the Royal London Hospital, Barts Health NHS Trust. She trained in Medicine at University College, Galway, Ireland, followed by general medical and dermatology training in Dublin and London. She was a Dermatology Foundation followed by a Howard Hughes Medical Institute Post-Doctoral Fellow with David Woodley at Northwestern University in Chicago from 1994-1998. Her specialist clinical interests are ichthyosis and palmoplantar keratodermas. She is the current clinical lead for the British Association of Dermatologists Dermatology and Genetic Medicine network. She is Chair of the Medical Advisory Board of the Ichthyosis Support Group, is on the steering committee of Pachyonychia Project and is actively involved in 100K Genomes, a gene discovery project within the NHS. She is on the board of the ESDR.

Alain Hovnanian, M.D, Ph.D, obtained his medical degree at University of Paris and trained in Dermatology and in Genetics in Paris. From 1993-2000, he did his post-doctoral fellowship at the Wellcome Trust Centre for Human Genetics at the University of Oxford, UK where he acquired experience in positional cloning of disease genes. He identified in particular the genes for recessive dystrophic epidermolysis bullosa, Darier disease and Netherton syndrome.  He is now Professor of Genetics at the University of Paris and Director of an INSERM research laboratory on genetic skin diseases at the Imagine Institute for genetic diseases. His research interests include epidermolysis bullosa, Netherton syndrome and palmoplantar keratoderma with a specific focus on Pachyonychia congenita (PC) and Olmsted syndrome (OS). In 2021, he was awarded the “Eurordis Black Pearl Award” for rare diseases. He is a member of the scientific advisory board and Genetics team of Pachyonychia Project. He recently identified a new gene for Olmsted syndrome, described EGFR hyperactivation in PC and showed that the oral EGFR inhibitor Erlotinib was an effective treatment for OS and PC patients.

Janice Schwartz earned a Bachelor’s degree in Communications with an emphasis in advertising from Brigham Young University. She has been associated with Pachyonychia Congenita Project since it was established. Born with a spontaneous case of PC, she was given a clinical diagnosis early in life, but it wasn’t until 2004 that she received a genetic confirmation of her KRT6A mutation. She has served on the PC Board of Trustees and as a PC Advocate, particularly helping and encouraging parents of children born with PC. She has planned and lead discussions at patient support meetings throughout the world and especially enjoys teaching children and teenagers with PC about their disorder and how to successfully deal with PC in daily life. She currently leads PC Project as a volunteer executive director. Janice lives in Salt Lake City, Utah with her husband and has four children, two of whom have PC.