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2006 patient support meeting

PC Project Patient Support Meeting (PSM)
July 18, 19, 20. 2006 - Dundee, Scotland
Photos, presentations and videos of meeting presentations are available through the special website for IPCRR participants.

Irwin McLean and Frances Smith hosted a spectacular event! There were 31 PC patients in attendance, 27 with known mutations. Patients were from 11 countries -- Brazil (1), England (11), Denmark (1), Finland (1), France (4), Ireland (1), Netherlands (1), Scotland (3), Sweden (1), USA (4), and Wales (1). Of these patients, there were 15 attending a PC meeting for the first time and 16 prior attendees.

A total of 24 patients participated in some associated research efforts, including sampling of hair and calluses from the feet which were sent to Salt Lake City for analysis. Also, patients participated in photo sessions and the results are a set of extraordinary photos of PC signs. These will be available on the PC website (see Images) and are a major and important contribution to understanding PC.

OVERVIEW OF PROGRAM

Tuesday evening (July 18) – Registration, dinner, introductions (and a reunion for prior meeting attendees), and overview of the conference.

Wednesday – (July 19)
Kids Session - Janice Schwartz with Robyn Hickerson, Rebecca Kaspar and Robert Kaspar

Morning Session
Welcome to Dundee - Irwin McLean
Clinical Features of PC - Sancy Leachman
Genetics of PC - Frances Smith
Biology of Keratins - Birgit Lane
Therapy Development for PC - Roger Kaspar

Afternoon Session
Tour of Irwin McLean’s Lab
Department of Human Genetics
University of Dundee

Dinner -BBQ at Magicwell House (home of Birgit Lane)

Thursday - (July 20)
Kids Discussion - Janice Schwartz
Kids Sensation Centre Field Trip

Morning Session
Physicians Panel led by Dr. Sancy Leachman with Drs. Peter Hull, Alan Irvine, Edel O’Toole and Pingyu Zhou
Preparation for Clinical Trials
Sancy Leachman

Afternoon Session
Kids Session - continued
Patient Discussion
Suzanne Barrall
Rachel Seher

Dinner -Lands of Loyal