Two more days! Early Bird Registration extended to August 16, 2010!
Register now! Don't miss this year's Biennial Conference to be held September 10-12, 2010. Book your rooms at the Bethesda North Marriott Hotel and Conference Center. Find workshop summaries, Lord of the Rings Satuday night event description, scholarship information, costs and all your conference details here.
Email Mary or call the PXE International office (202-362-9599) to donate your own raffle item. We appreciate your generosity!
Cape Cod in August, Bethesda in September - by Jessica Harper
"While I leave LA in August in search of a real summer (with in-laws) in Cape Cod, I'm looking forward to leaving LA again in September to find (and renew) real connections at the PXE International Conference in Bethesda." Full article
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Just the Facts, Please
Some PXEers and others in the PXE community continue to be misled by some enduring myths about PXE. Do your part to combat this misinformation by getting the facts straight. Here the Top Ten of these myths are called out and debunked.
The Top Ten PXE Myths, by Pat Manson
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September Webinar: Vascular Manifestations of PXE - Know the Signs
Presenter: Andrea Yancey, MD, Assistant Professor of Surgery, University of Louisville School of Medicine
Date: Wednesday, September 22, 2010
Time: 7:00 PM Eastern
Register
Recognize signs and symptoms of vascular disease in PXE. Learn about altering risk factors that can prolong your life. Be aware of what your physician should be looking for (symptoms and on exam) and what tests should be ordered for you if and when needed, as well as options for interventions should vascular disease develop.
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Retinal Treatments
There is a great deal more hope for individuals affected by PXE when they experience choroidal neovascularization (CNV) than there has been in prior decades. In recent years, the advent of anti-VEGF therapies, originally developed in cancer therapy, has given both patients and providers great hope.
Summary of recent research
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