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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Explore the eNewsletter archives.

• May 2013
• April 2013
• March 2013
• February 2013
• January 2013

May 2013 [Volume 6, No. 5]

• Press Release: Announcing a Clinical Trial of Magnesium Supplementation for the Treatment of Pseudoxanthoma Elasticum (PXE)
• Making History of PXE: Elizabeth Terry's experience of the PXE clinical trial
• Interviews with the Clinical Trial Team
• Clinical Trial FAQ
• Magnesium and Dietary Supplements
• Progress Report

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April 2013 [Volume 6, No. 4]

• Warfarin Accelerates Mineralization in PXE Knockout Mice
• New webinar! "What is the mutated PXE-associated protein doing (or not doing) in the liver, and can we fix it?
• IRDiRC meeting in Dublin April 16 & 17 seeks 200 treatments for rare diseases by 2020
• Audacious Goals Initiative - NEI holds historic "do-it-yourself" development meeting
• Hurdles to Successful Fundraising, and How to Jump Them

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March 2013 [Volume 6, No. 3]

• Plans underway to expand access to federally-funded research results
• More Books for PXEers, by Pat Manson
• Audiobook Services: Something for Everyone, by Alan Lemly
• Old Passions, New Goals: Figure Skating Success, by Rachel Koren

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February 2013 [Volume 6, No. 2]

• Stem cell therapy experiments in the PXE mouse
• 2012 Annual Report
• Flu Flyers, by Jessica Harper
• 2012 Health Challenge winners
• 6th International Rare Disease Day is February 28

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January 2013 [Volume 6, No. 1]

• Congratulations to Sharon Terry, Jouni UItto, and all Rare Disease Heroes!
• Do you have a child with PXE? We need you for a research study!
• Yardi Systems awards PXE International grant of $25,000
• PXE International Research Coordinator, Abbie Moore, named Genetic Alliance Registry and BioBank Manager
• Spain's government declares 2013 the Spanish Year of Rare Diseases

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