About Pachyonychia Congenita Project

PC Headquarters

PC has a small office space in this lovely building. Co-tenants provide all utilities (including phone service) as a donation to the PC cause.

PC Project Building


Lex L. Udy. PhD (Scientist and CEO; retired) CHAIR
C. David Hansen, MD (Dermatologist)
Roger L. Kaspar, PhD (Scientist and CEO)
David R. Owens, Esq. (Attorney)
Mary E. Schwartz (PC Project Director)
Janice N. Schwartz (PC Project Patient Advocate)
Craig T. Vincent, Esq. (Attorney)
B. Jackson Wixom

Pachyonychia Congenita Project (PC Project) has been recognized since 2004 as a public charity in the USA. With limited staff and a small budget, PC Project connects patients, researchers and physicians throughout the world in a united effort to help those with Pachyonychia Congenita.


Mary E. Schwartz, Director
Holly A. Evans, Assistant Director
Janice N. Schwartz, Patient Advocate
Julie Peconi, Social Media Co-ordinator
Margaret Jackson, Volunteer

Note: Holly Evans is a full-time paid employee. Mary Schwartz is a full-time volunteer. Janice Schwartz, Julie Peconi and Margaret Jackson are part-time volunteers.


Click on the photo or name for further information on each member.
               Sherri Bale     David Hansen     Peter Hull     Roger Kaspar     Birgitte Lane 
               John McGrath     Irwin McLean     Leonard Milstone     Edel O'Toole     Amy Paller 
               Dennis Roop     Frances Smith     Eli Sprecher     Jean Tang     Maurice van Steensel

Sherri J. Bale, PhD, GeneDx, Inc., Gaithersburg, MD, USA
Philip David Gard, MBChB (retired)
C. David Hansen, MD, University of Utah, Salt Lake City, UT, USA
Peter R. Hull, MD, PhD, FFDERM, FRCP, Royal University Hospital, Saskatoon, Saskatchewan, Canada
Roger L. Kaspar, PhD, TransDerm, Inc., Santa Cruz, CA, USA
E. Birgitte Lane, PhD, FRSE, FMedSci, Institute of Medical Biology, Singapore, Singapore
John A. McGrath, MD, PhD, King's College, London, England UK
W. H. Irwin McLean, DSc, FRSE, University of Dundee, Dundee, Scotland UK
Leonard M. Milstone, MD, Yale School of Medicine, New Haven, CT, USA
Edel O'Toole, MD, PhD, FRCPI, FRCP, Queen Mary University of London, London, England UK
Amy S. Paller, MD, Northwestern University, Chicago, IL, USA
Dennis R. Roop, PhD, University of Colorado, Aurora, CO, USA
Frances J.D. Smith, PhD, University of Dundee, Dundee, Scotland UK
Eli Sprecher, MD, PhD, Tel Aviv Sourasky Medical Center, Tel Aviv, Israel
Jean Y. Tang, MD, PhD, Stanford Dermatology, Redwood City, CA , USA
Maurice A.M. van Steensel, MD, PhD, University Hospital Maastricht, Maastricht, The Netherlands


PC Project provides services throughout the world and currently serves patients in nearly 60 countries. No matter where you live, PC Project is here to provide services and support for patients, physicians and researchers.

In some countries, PC patients have united to support PC Project.

DermatologiaBrazil.  Dermatologia.net is an important site which makes available information in Portuguese about PC

Le Coeur Au Pied

France.  Le Coeur au Pied is a charity for PC patients in France which supports PC Project. The president is Sylvie Cierpucha. This group is exceptionally effective in patient recruitment, information sharing and fundraising for PC Project for research and patient services.


PC UKUK.  PC Project UK is organized under the Trust Fund services of the University of Dundee. Residents of the UK have a Gift Aid matching donation. Funds raised through this group support the biennial Patient Support Meetings as well as research projects for PC and related disorders.