Nape is an organization committed to the support for people who have Pseudoxanthoma Elasticum (PXE). Pseudoxanthoma Elasticum, is an inherited disorder that affects the skin, the retina of the eyes and the cardiovascular system. NAPE is headquartered in St. Louis, Missouri. Everyone with PXE and those with an interest in PXE are encouraged to join this organization.
PXE International offers support for affected individuals, their families, clinicians and researchers. 45 51 offices around the world help provide local contacts for the more that 1600 2200 registered individuals. Our database of over 6000 clinicians familiar with PXE is available to patients seeking a dermatologist, ophthalmologist or cardiologist. We provide medical and lay bulletins about the various systemic manifestations of PXE. 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.