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President's
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Welcome to NAPE. This
website has been prepared to respond to the concerns of
those diagnosed with pseudoxanthoma elasticum (PXE), their
families and friends. Here you will find articles from
our quarterly newsletter, PXE Awareness, which were prepared
to respond to major concerns raised by our members.
You also will find a popular newsletter column, Questions
and Answers. We have presented here questions that
continue to be frequently asked. We will continue to
add to both sections those articles and questions that our
readers report as helpful.
You will find in PXE Pals, contact information so that
you may write, telephone or email someone who has PXE and is
willing to share experiences, concerns and information.
There also is contact information should you like us to
contact you or receive your questions. If our
information helps you, please join us by printing out,
completing our membership form and sending it to our office.
We'll add you to our mailing list for future issues of PXE
Awareness which will keep you informed of our activities as
well as relevant medical information as it becomes
available.
You will find the most recent issues of our newsletter, PXE Awareness posted and I will write a letter to you in each issue. If you have any feedback on how we are helping you or can help you better, please let us know. We love to hear from our members and friends!
Kind regards,
Frances Benham, President
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