Published monthly, our eNewsletters keep you up to date on the latest happenings at PXE International.
If you would like to receive the eNewsletter, please register with PXE International.
November 4, 2013 [Volume 6, No. 9]
- PXE Research Meeting held in Budapest, September 2013
- Interview with Yale student, Alex Borsa
- DNA sequencing: From the past to the Next Generation
- September and October 2013 webinars now available
- NEI Audacious Goal chosen
September 23, 2013 [Volume 6, No. 8]
- What's happening in PXE Research? New webinar October 29
- What's Worse?, by Jessica Harper
- The Common Thread in Kirk's Life, by PXEer Kim Griffiths
- CFCNCA - Select PXE International #95502
- Meet our new interns
August 1, 2013 [Volume 6, No. 7]
- Update on gene patenting in the USA
- New webinar! What role do modifier genes and biomarkers play in PXE?
- Standing Ovation, by Linda Falconiero
- First IRDiRC conference publishes conference report and policy guidelines
- Join together to divide and conquer! Would you raise $160 for PXE Research?
June 28, 2013 [Volume 6, No. 6]
- Summary of the 2012 PXE Research Meeting
- Curling - Tammy's Way, by Kim Griffiths
- I'm in Love with an Acrobat, by Jessica Harper
- PXE International - Trailblazing for a Cure, by Erica Rascon for The Balance Sheet
- Where Does Your Money Go?
May 31, 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 30, 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 28, 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 26, 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 30, 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