News
March 11, 2014 PXE News
March 11, 2014
PXE International to be part of the National Patient-Centered Research Network through Genetic Alliance and PCORI
PXE International and nine other disease advocacy organizations, supporting conditions from rare to common, were competitively selected by Genetic Alliance to participate in the pilot of CENA, a health data network that will be part of the National Patient-Centered Clinical Research Network through Genetic Alliance.
March 11, 2014 PXE News
March 11, 2014
AREDS2 trial: What it means for macular degeneration, and PXE
Recommended by the 2001 Age-Related Eye Disease Study (AREDS), AREDS vitamin supplements are often taken as a preventative treatment for both AMD and retinal symptoms of PXE. New interests and concerns prompted researchers from the National Eye Institute to launch the AREDS2 study in 2006. Their results were published in 2013.
Nov 4, 2013 PXE News
November 4, 2013
PXE Research Meeting held in Budapest, September 27-28, 2013
Forty researchers gathered in Budapest in September to discuss progress in PXE research. There are many new questions and many persistent questions that remain unanswered. There are also many new ideas ready to be tested.