They are starting a national database for researchers. 45 offices around the world help provide local contacts for the more that 1600 registered individuals. Our database of over 6000 clinicians familiar with PXE is available to patients seeking a dermatologist, ophthalmologist or cardiologist. We have a quarterly newsletter. We also have three on-line discussion lists.
All services are free of charge, as is membership.
We initiate and support research and manage the PXE International Blood and Tissue Bank. We coordinate the PXE Research Consortium. International's mailing list on the Internet. We have established this list to provide a place for people interested in PXE to discuss the disorder, its medical implications, advances in research and possible treatments.