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 [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
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
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
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
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