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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.
National Association for Pseudoxanthoma Elasticum
a/k/a: NAPE
Address
8760 Manchester Road
St. Louis, MO 63144-2724
USA
Phone
314-962-0100
Fax
314-962-0100
800 Number
--
TDD
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Email Address
NAPEStLouis@sbcglobal.net
Chapters
1
Website
The National Association for Pseudoxanthoma Elasticum (NAPE), established in 1988, is a non-profit organization dedicated to the support and education of patients, their families and friends, and the medical and research profession regarding pseudoxanthoma elasticum (PXE). PXE is a rare connective tissue disease that is inherited and progressive, and affects the elastic tissues of the body. NAPE promotes patient advocacy, provides an educational brochure, produces and distributes quarterly newsletters to affected individuals, families and healthcare professionals, and organize an annual conference to help those with PXE meet other with PXE and provide additional support and education. NAPE also sponsors a program to help members purchase low vision aids that they might not be able to afford otherwise.
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