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Pachyonychia Congenitia Project

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Patient Support Meetings

“At the Patient Support Meeting (PSM), for the first time, I looked into the eyes of another person with the same disease, saw them move like me, saw them use the same tricks that I use to get through their day. This gave me an immense feeling of no longer being alone and it’s a wonderful feeling. I would say that I’ve never been as happy and confident before the PC PSM experience.” a PCer.

For information and registration for the current Patient Support Meeting go to the News & Events page for information on registering for the meeting

2023 New Orleans Patient Support Meeting

2022 Virtual PC Patient Support Meeting

2022 Amsterdam Mini PC Gathering

2022 Minneapolis PC Patient Gathering

2021 Virtual PC Patient Support Meeting

2020 PC Teen Web Meeting Nov 21

2020 France PC Patient Support Meeting Postponed

2019 Boston Patient Support Meeting June 20-22

2018 London England Patient Support Meeting Oct 19-21

2017 PC Patient Support Meeting Jun 15-17

Other Past Patient Support Meetings

 

2016 EDINBURGH, SCOTLAND UK – OCTOBER 28-30, 2016

The meeting was held at the Edinburgh Capital Hill Hotel. There were 32 PCers and over 100 attendees. Read more in the November 2016 PC NewsBrief.

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2015 NEWARK, NEW JERSEY USA – JUNE 14-16, 2015

The meeting was held at the Renaissance Newark Airport Hotel. There were 61 PCers and over 100 attendees. Along with this meeting we held full dermatologic exams and a pain study. Read more in the June 2015 PC NewsBrief.

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2014 EDINBURGH, SCOTLAND UK – OCTOBER 26-28, 2014

The meeting was held at the Edinburgh Capital Hill Hotel. This meeting was organized by Irwin McLean and Frances Smith and their team. There were 42 PCers and almost 100 attendees. Along with this meeting we held full dermatologic exams and a pain study. Read more in the November 2014 PC NewsBrief.

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2013 SANTA CRUZ, CALIFORNIA USA – JUNE 20-22, 2013

The meeting was held at the beautiful Chaminade Hotel and Spa. Of special interest was the testing of special microneedle arrays as part of preparations for future clinical studies. The meeting concluded with the 2nd Annual Run-Bike-Run PC Fundraising event.

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2012 EDINBURGH, SCOTLAND UK

The meeting was held at the Best Western Hotel in Edinburgh, Scotland and co-sponsored by PC-UK. There were 47 PCers and a total of 98 attendees. More than $6,000 in scholarship funding was awarded.

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2012 PARIS, FRANCE

Le Coeur au Pied sponsored this meeting held in Roiss, France at the *. There were 29 PCers and 60 total attendees. Scholarship funding of over $2,500 was awarded. L’Oreal presented a grant check to PC Project in support of PC Awareness Around The World events.

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2011 PHILADELPHIA, PENNSYLVANIA USA

The largest PC meeting to date was held at the Marriott Airport Hotel. 65 PCers and 134 total individuals participated. A major pain study was conducted during the meeting. Scholarships of more than $7,500 were funded.

psm2011nycdinner

NEW YORK CITY MINI MEETING

In November 2011 a special PC dinner was hosted for PCers in the New York City area.

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2010 EDINBURGH, SCOTLAND UK

Patients from many countries in Europe attended this meeting held at the Best Western Hotel in Edinburgh, Scotland.

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2010 ROISSY, FRANCE

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2010 MIAMI BACH, FLORIDA USA

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2009 SALT LAKE CITY, UTAH USA

The meeting was held September 24, 25, 26. The site was the Red Lion Hotel located in Salt Lake City, Utah. A total of 61 individuals (including 23 PCers) attended. The theme of this meeting was “Prepare for Success.” Every session was focused on specific things PCers can do to be successful in life, regardless of having PC.

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2009 SAN FRANCISCO, CALIFORNIA USA

psm2009oct-newyork

2009 NEW YORK CITY, NEW YORK USA DINNER

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2009 CALGARY, CANADA DINNER

psm2008pitlochryadultgroup

2008 PITLOCHRY, SCOTLAND UK

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2008 HEFEI, CHINA

psm2007jul-parkcity

2007 PARK CITY, UTAH USA

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2006 DUNDEE, SCOTLAND UK

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2005 NIAGARA FALLS, ONTARIO, CANADA

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2004 DUNDEE, SCOTLAND UK

psm2004jul-kansaspsm2004may-saltlake

2004 KANSAS CITY, MISSOURI USA

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2004 SALT LAKE CITY, UTAH USA

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PACHYONYCHIA CONGENITA PROJECT

P.O. Box 17850
Holladay, UT 84117

info@pachyonychia.org

801-987-8758

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