helping families with painful genetic skin conditions

PC Awareness Day Around the World! 2 June 2012

Wed, 04/25/2012 - 21:20

Event List - see attached files, to see the many great ideas PCers have come up with around the world. Raise awareness, celebrate with all of your PC family, have fun, raise funds. Contact us at www.pachyonychia.org if we can help you in any way.

PLEASE JOIN WITH US - PC is such a rare disorder that we need everyone to join with us. Even if you just read the brochure yourself and donate whatever you can (£1 or £1000 or ...) Please know that ANYTHING you plan will be great and help to build the power of our united effort to find treatments and a cure for PC. PLEASE BE PART WITH ALL YOUR PC COMMUNITY/FAMILY.

NEW - PC Project will host a webinar all day on June 2 so you can meet and greet one another from wherever you are. More later on this at www.pachyonychia.org.

CAN YOU HELP US KEEP THE PUBLICITY GENERATING?

(1) If you use Facebook, please keep posting going there and on Twitter, too, if you like to Tweet!
(2) We'll keep blogging on the PC Website (www.pachyonychia.org) and you can add a comment there to any blog
(3) If you know other PCers, email them and encourage them to have FUN and plan to do something for PC Awareness Day 2012. And, be sure to tell them to let us know that they will participate in some way.

Imagine joining hands in this wonderful opportunity to be creative, have fun with friends, raise funds for PC research and support -- and raise awareness of PC and PC Project's mission in your own communities, culture, and language. Let's start teaming up and sharing ideas! Together we are strong! Please add comments here! and blog on our Facebook Events page. For guidelines see our Events page (www.pachyonychia.org).

PC Project UK receives a grant from Jeans for Genes:April 2012

Tue, 04/24/2012 - 15:06

Researchers at the University of Dundee have recently been awarded a grant of £4,500 from Jeans for Genes/Genetic Disorders UK. This award will go towards funding the next patient support meeting in Edinburgh, October 2012.

2012 PC Patient Support Meeting, Edinburgh:28-30th October

Tue, 04/03/2012 - 17:01

The next patient support meeting will be held at the Best Western Edinburgh Capital Hotel, Edinburgh, Scotland from 28-30th October 2012.  The meeting will begin Sunday evening, October 28th with registration and a welcome dinner and will continue with presentations and discussions on Monday, October 29th and half day on Tuesday, October 30th. The meeting will conclude with a luncheon at noon on Tuesday, October 30th.  Please see attached file for details.

REGISTRATION: Please register for the meeting as early as possible at http://www.pachyonychia.org/PATIENTS/events.php

Bath Half Marathon raised £860:March 2012

Sat, 03/31/2012 - 20:40

Three family members of a PCer ran the Bath Half Marathon raising at least £860 - well above their target of £500!  Check out their PC Project UK vests that they had made for the event ! - anyone holding fundraising events & needing the logo/leaflets etc please contact us in Dundee (Tel 01382 381046).  Many thanks to all their family and friends who supported them.

Tayside and Fife Chess Association:December 2011

Fri, 12/02/2011 - 18:14

Thanks to all the players who participated in a chess tournament raising funds for PC Project UK.