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International PC Consortium (IPCC)
The IPCC was founded in
Feb 2004 by clinicians and research scientists
who agreed to collaborate to develop and deliver effective
therapeutics to PC Patients.
If you would like to participate with the IPCC, please contact:
International Pachyonychia Congenita Consortium (IPCC)
2386 East Heritage Way, Suite B,
Salt Lake City, UT 84109
Clinical Trial
January 17, 2007. PRESS RELEASE. Clinical trial to treat rare skin disorder with siRNA technology.
Stanford University Blog Regarding TD101
NOTE: During 2008, the IPCC will form a "Physicians Network" for those physicians who are treating PC patients. The purpos will be to evaluate various therapeutics and prepare for future clinical trials. If you are interested in participating with the IPCC Physicians Network, please contact IPCC@pachyonychia.org
IPCC MEMBERS
In 2007, the IPCC formed working groups to achieve specific goals. IPCC working group leaders and members are listed, as well as the general IPCC members. We invite everyone to participate in an IPCC working group.
2007-2008 IPCC WORKING GROUP LEADERS
BIO MARKER
Robyn Hickerson PhD, Santa Cruz, CA, USA
CLINICAL ADVISORY
Sancy Leachman MD PhD, Salt Lake City, UT, USA
DELIVERY SYSTEMS & ANIMAL MODELS
Roger L. Kaspar PhD, Santa Cruz, CA, USA
GENETICS
*Frances J.D. Smith PhD, Dundee, UK
PATIENT SUPPORT MEETING 2008
W. H. Irwin McLean DSc FRSE, Dundee, UK
REGISTRY
Peter Hull MD, Saskatoon, Canada
2008 IPCC SCIENTIFIC MEETING
Xue-Jun Zhang MD, Hefei, China
IPCC WORKING GROUP MEMBERS
a link to their home page is included when available
*Sherri J. Bale PhD, Gaithersburg, MD, USA
Jiang Chen MD, Aurora, CO, USA
Keith Choate MD, New Haven, CT, USA
Christopher Contag PhD, Stanford, CA, USA
Marcela Del Rio PhD, Madrid, Spain
John J. DiGiovanna MD, Providence, RI, USA
Mark J. Eliason MD, Salt Lake City, UT, USA
*Philip Fleckman MD, Seattle, WA, USA
Marianna Foldvari DPharmSci PhD, Waterloo, Canada
Marta Garcia PhD, Madrid, Spain
David Goldgar PhD, Salt Lake City, UT, USA
Emilio Gonzalez PhD, Santa Cruz, CA, USA
*C. David Hansen MD, Salt Lake City, UT, USA
Robyn Hickerson PhD, Santa Cruz, CA, USA
Peter Hull MD, Saskatoon, Canada
Alan Irvine MD MRCP, Dublin, Ireland
*Roger L. Kaspar PhD, Santa Cruz, CA, USA
E. Birgitte Lane FRSE FMedSci, Dundee, UK and Singapore
Fernando Larcher PhD, Madrid, Spain
*#Sancy Leachman MD PhD, Salt Lake City, UT, USA
Irene Leigh MD DSc FRCP, London, UK
*W. H. Irwin McLean DSc FRSE, Dundee, UK
*Leonard M. Milstone MD, New Haven, CT, USA
Lloyd Mitchell MD, Bethesda, MD, USA
Edel A. O'Toole MD, London, UK
Amy Paller MD, Chicago, IL, USA
*Dennis R. Roop PhD, Aurora, CO, USA
*Frances J.D. Smith PhD, Dundee, UK
Eli Sprecher MD, Haifa, Israel
Carl Swartling MD, Uppsala, Sweden
Paul Wender PhD, Stanford, CA, USA
Xue-Jun Zhang MD, Hefei, China
Pingyu Zhou MD PhD, Shanghai, China
2007-2008 IPCC GENERAL MEMBERS
Carol Oh Adib MD, St. Lucia, Australia
Eulalia Baselga MD, Barcelona, Spain
Susan Bayliss MD, St Louis, MO, USA
*R. Ralph Bradley MD, Salt Lake City, UT, USA
Flemming Brandrup MD PhD, Odense, Denmark
Anette Bygum MD, Odense, Denmark
Thomas D. Cain DPM, Snellville, GA, USA
*Mario R. Capecchi PhD, Salt Lake City, UT, USA
Roman Carlos MD, Guatemala City, Guatemala
Julide T. Celebi MD, New York, NY, USA
Bernard Cohen MD, Baltimore, MD, USA
Pierre Coulombe PhD, Baltimore, MD, USA
Loretta S. Davis MD, Augusta, GA, USA
Jon A. Dyer MD, Columbia, MO, USA
Robin A.J. Eady MD, London, UK
Tony Egan MD, Drogheda, Ireland
Ervin H. Epstein MD, San Francisco, CA, USA
Scott Florell MD, Salt Lake City, UT, USA
Richard M. Haber MD, Calgary, Canada
Jennifer Hand MD, Rochester, MN, USA
Alain Hovnanian MD, PhD Toulouse, France
*Olga Igoucheva PhD, Philadelphia, PA, USA
Brian Johnston PhD, Santa Cruz, CA, USA
Marcel F. Jonkman MD PhD, Groningen, Netherlands
Aleksej Kansky MD, Ljubljana, Slovenia
Brandi Kenner-Bell MD, Chicago, IL, USA
Paul A. Khavari PhD, Stanford, CA, USA
*Gerald G. Krueger MD, Salt Lake City, UT, USA
*Markus Landthaler PhD, New York, NY, USA
Rudolph Leube MD PhD, Mainz, Germany
*Alfred S. Lewin PhD, Gainesville, FL, USA
Haihui Liao MD, Dundee, UK
Colette D. Lieber MD, Mayway, NJ, USA
Ross McLeod MD, Calgary, Canada
Jemima E. Mellerio MD, London, UK
Brandie J. Metz MD, Orange, CA, USA
Bozena Michniak-Kohn PhD, Piscataway, NJ, USA
Celia Moss MD, Birmingham, UK
Colin S. Munro MD PhD, Glasgow, UK
Brian Nickoloff MD PhD, Chicago, IL
Phoebe Rich MD, Portland, OR, USA
Todd Ridky PhD, Stanford, CA, USA
Elizabeth Rugg PhD, Irvine, CA, USA
Matthias Schmuth MD, Austria
Michael Seidman PhD, Bethesda, MD, USA
Robert A. Silverman MD, Fairfax, VA
Mary K. Spraker MD, Atlanta, GA
Alain Taieb MD, Bordeaux, France
Jean Y. Tang MD PhD, Redwood City, CA, USA
Jouni Uitto MD PhD, Philadelphia, PA, USA
*Maurice van Steensel MD PhD, Maastricht, Netherlands
*Kyonggeun Yoon PhD, Philadelphia, PA, USA
Xue Zhang MD PhD, Beijing, China
Yiwei Zhao PhD, Dundee, UK
Key
* Founding Member of IPCC
*# = IPCC Chair
DSc = Doctor of Science
FRSE = Fellow of the Royal Society of Edinburgh
DPM = Doctor of Podiatric Medicine
MD = Doctor of Medicine (physicians)
MRCP = Membership of the Royal College of Physicians
PhD = Doctor of Philosophy (scientists)
FRCP = Fellow of the Royal College of Physicians
IPCC Meetings
2007
May 2007, Los Angeles with the Society of Investigative Dermatology. There were approximately 75 attendees. A meeting was also hosted with PC patients from the Los Angeles area and invited members of the IPCC.
2007 Program-at-a-Glance
2007 Meeting Summary, IPCC Newsletter Vol 4, No 3
2006
May 2006, Philadelphia with the Society of Investigative Dermatology. The meeting was funded through an NIH/NIAMS R-13 grant.
2006 Program-at-a-Glance
2006 Meeting Summary, IPCC Newsletter Vol 3, No 2
IPCC
Action Plan, IPCC Newsletter Vol 3 No 2 and updated Vol 3, No 3
2005
May 2005, St. Louis with the Society of Investigative Dermatology. This status report on the progress of the IPCC research and support goals was presented as a slide presentation at the 2005 IPCC meeting and adapted for posting here as a report on progress. A total of ten members of the IPCC received PC Project grant funding during 2004-2005.
2005 Program-at-a-Glance
2004
The IPCC was organized at the 1st PC Symosium held in Park City, Utah in February 2004.
2004 Program-at-a-Glance
IPCC Newsletters
2007
Vol 4/No 1 ----Vol 4/No 2 ----Vol 4/No 3 ----Vol 4/No 4
2006
Vol 3/No 1 ----Vol 3/No 2 ----Vol 3/No 3 ----Vol 4/No 4
2005
Vol 2/No 1 ----Vol 2/No 2 ----Vol 2/No 3 ----Vol 2/No 4
2004
Vol 1/No 1 ---- Vol 1/No 2 ---- Vol 1/No 3 ---- Vol 1/No 4
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