PXE NAPE logo NAPE, Inc.
8760 Manchester Road
St. Louis, MO 63144-2724
Tel / Fax: 314-301-7345

Home Current Issue Must Reading Selected Articles FAQ Archive Issues Member Info Conference

Website Sections
PXE Awareness Current Issue
Selected Articles
Must Reading for the Newly Diagnosed
FAQ (Frequently Asked Questions)
PXE Awareness Archive
Member Info

About This Website

NAPE (The National Association for Pseudoxanthoma Elasticum) is a nonprofit 501(c)3 organization whose primary mission is to educate PXE patients and their families to live and cope successfully with PXE as we work to identify treatments and a cure. NAPE members played a vital role in the research which identified the locus of our mutant gene and later that gene, ABCC6. NAPE members, under the guidance of Dr. Kenneth Neldner, provided the DNA samples and family histories which made the research possible. NAPE's mission is conducted through its website, quarterly newsletter (PXE Awareness), its telephone and email counseling services and through biennial meetings which move about the country to accommodate member travel needs.

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The website consists of a number of parts, the most basic being the PXE Awareness Archive which includes all PXE Awareness issues. They are listed by volume number, issue number and date. Readers can click on the issue listing in the index to get to a specific issue.

"Selected Articles" is a subset of selected articles from the archive of PXE Awareness issues. It includes the full text of articles whose content is still up-to-date and relevant to those living with PXE. Many interesting articles included in archived issues are not included in this section because new scientific knowledge has replaced, corrected or added significantly to what previously was understood. That is the beauty of science - it constantly builds on previous understandings. To obtain an article from this index, click on the title found under the subject of interest. You will find the full text, without illustrations, which can be read or printed from the screen, can be read by a computer screen-reader, or if your computer supports a sound system you can click on the ear illustration to hear the recorded article read online.

The NAPE office hears from the recently diagnosed by email and telephone. They are in urgent need of information. For them we have created "Must Reading for the Newly Diagnosed." It consists of texts of articles which are included in "Selected Articles." Those newly diagnosed should read these articles first to develop a foundation of information about PXE. Since most doctors seldom see PXE patients, those who have PXE must learn on their own. The materials presented here are developed for PXE patients with help from caring physicians and scientists. These articles can be read on-screen, printed, read by a computer screen-reader, or heard in recorded format by clicking on the ear illustration.

"FAQ (Frequently Asked Questions)" is a selection of questions with answers from NAPE's Q&A section of PXE Awareness. Simply click on a subject heading and scroll through the questions in that subject. These also are recorded - simply click on the ear illustration to hear the recording.

"Current Issue" provides access to the latest published issue of PXE Awareness. When a new issue is added, this issue moves to The "PXE Awareness Archive."

"Member Info" is a section which includes a membership application, donation form, and change of address form. Print out a copy of the form needed, complete it and mail to NAPE, Inc., 8760 Manchester Rd, St. Louis, MO 63144-2724. An Amsler grid also is available and can be printed for home use.

"Conference" is a section which announces conference meetings, with hotel and speaker schedules. It provides information and registration forms. Please print the registration form, complete it and mail to NAPE, Inc., 8760 Manchester Rd, St. Louis, MO 63144-2724.

Home Current Issue Must Reading Selected Articles FAQ Archive Issues Member Info Conference