eNews


Published monthly, the eNewsletter keeps you up to date on the latest happenings at PXE International: research highlights, event announcements, glimpses into PXEers' personal stories, new pages on the website, fundraising opportunities.

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Archived eNewsletters2013 • 2012 • 2011 • 2010 • 2009 • 2008
 



June 30, 2014 [Volume 7, No. 3]
Let Your Voice Be Heard - Stories from participants in the magnesium clinical trial

  • Let Your Voice Be Heard - Stories from participants in the magnesium clinical trial
  • Feeling Like a Useless Parent - by Al Ditheridge
  • Remembering Al Ferrari - by Angela Ferrari
  • PXEer Stacy Duppong writes her story for Inspired Woman magazine
  • New artists, Kayla and Wendy at PXE and Art
  • 2014 PXE Research Meeting scheduled for September 22-23, 2014
  • Meet our summer interns, Nikhil and Rebecca

Read the June 2014 eNewsletter.



March 11, 2014 [Volume 7, No. 2]
AREDS2 and eye vitamins: What it means for macular degeneration, and PXE

  • The AREDS2 trial: What it means for macular degeneration, and PXE
  • The DMV vs. France, by Jessica Harper
  • Social Gathering for New England PXEers May 31, 2014
  • PXE International to be part of the National Patient-Centered Clinical Research Network through Genetic Allliance and PCORI
  • Genetics meets public health - GenesInLife.org
  • Andy Cremer shares his PXE story for Rare Disease Day 2014
  • To all PXE Magnesium Supplement Clinical Trial participants - Let your voice be heard!

Read the March 2014 eNewsletter.



January 31, 2014 [Volume 7, No. 1]
Thank you for your generous support!

  • 2013 giving and 15th Anniversary Challenge pledges total $1 million dollars
  • Networking PXEers in 2014
  • Join in the PXE Chat
  • Rare Disease Day, February 28, 2014

Read the January 2014 eNewsletter.