May 11, 2010
PXE International BioBank Is World's Largest Repository of Pseudoxanthoma Elasticum Biological and Clinical Information
The PXE International BioBank, established in 1995, was the first lay-managed and -organized BioBank in the world, and continues to lead the way in novel infrastructure and aggressive dissemination.
October 1, 2010
PXE International BioBank and Clinical Data Registry
What disease has the world's largest rare disease biobank and repository? Pseudoxanthoma elasticum (PXE)! How can you be involved? What has it done for you lately?
February 1, 2011
Genetic Alliance Registry and BioBank: a novel disease advocacy-driven research solution
Based on the PXE International Registry and BioBank model, six disease advocacy organizations established in 2003 the Genetic Alliance Registry and BioBanks (GARB), a cross-disease, infinitely expandable registry and biorepository.