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September 7, 2012
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debra FALL 2012 E-NEWSLETTER
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PCC 2012 (146) 2
2012 Patient Care Conference (PCC)
"I see this conference as a huge success for kids with EB, for EB research, and for harmonization of academia, industry and debra.  I am proud to be a part of the process."
               -Jakub Tolar, MD, PhD, University of Minnesota


Thank you to all the EB families, medical professionals, researchers, volunteers and our generous sponsors who joined us from July 30 - August 1 for the biennial PCC at the Gaylord Palms Resort in Orlando, Florida.  This conference had the highest attendance in history. 
View our press highlights from WKMG 6 CBS-TV and the Orlando Sentinel.

Do you have a PCC story you'd like to share?  Email pcc@debra.org.


Photos and video are now available online at debra.org/pcc2012.


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14th Annual Mats Wilander
Tennis & Golf Benefit
presented by Mö
lnlycke Health Care
On Monday, October 1, 2012 debra of America's Board of Trustees invites you to a morning of tennis on the courts with legends Mats Wilander and John McEnroe and/or an afternoon of challenging 18-holes at our new venue, the prestigious Quaker Ridge Golf Club in Scarsdale, NY.  The evening portion of the Benefit will begin with a cocktail reception and exciting silent auction.  A 3-course seated dinner, music and dancing, our Honorees awards ceremony, and a live auction conclude the day’s festivities.  All proceeds benefit debra of America in its mission to eradicate the inherent daily suffering of living with Epidermolysis Bullosa (EB).
 
Can't attend? Donate to the Benefit by purchasing a Journal Ad for your business or "In Memory of" a loved one.
 
Sponsorship and Benefit Journal Advertising available at debra.org/MatsWilander2012.

 
To donate a Live/Silent Auction item, email events@debra.org.
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From the debra Desk
National EB Awareness Week: October 25-31, 2012
      Organize a debra Local Event, or attend one in your area to
      support debra of America and raise awareness about EB.


2012 ING NYC Marathon
      On November 4, "Team debra" will be running for the first
      time in the NYC Marathon.  Donate to our runners or join the
      tea
m.

Vote for DebRA!
      Chase Community Giving is a program that awards $7.5 million
      in grants to charities.  Log in to Facebook and vote for debra
      here.  Chase members can vote here.

Be Part of the Cure with Every Swipe
      Support the cause every time you shop. Apply for your d
ebra
      Capital One® Platinum Visa® Credit Card today.

EBCare Registry
     
debra has launched the first patient reported registry in
      partnership with DEBRA International and Lotus Tissue Repair.
      The confidential information collected will be used to
promote
      research
, support policy initiatives and increase awareness.
      Please sign up now.

The Epidermolysis Bullosa (EB) News
page on our website provides (EB) press news from across the country, and around the world.

Visit our DebRA Announcements page and learn about our latest events, programs, services and more.

"Epidermolysis Bullosa... the worst disease you've never heard of."

           -Brett Kopelan (Executive Director, debra of America)
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