You are here: Home / Rare Disease Information / Patient Organizations Database

Search Patient Organizations

Enter organization name or disease name to search for organizations that help people with rare diseases.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

**IMPORTANT**

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.

PXE International, Inc.

a/k/a: PXE

Address

4301 Connecticut Ave NW
Suite 404
Washington, DC 20008-2304
USA

Phone

202-362-9599

Fax

202-966-8553

800 Number

--

TDD

--

Email Address

info@pxe.org

Chapters

52

Website

http://www.pxe.org

The PXE International, Inc., is a voluntary organization established in 1995 for the purpose of disseminating information on pseudoxanthoma elasticum (PXE) to affected individuals, families, and doctors. PXE is an inherited disorder that affects selected connective tissue in some parts of the body. Elastic tissue in the body becomes mineralized; that is, calcium and other minerals are deposited in the tissue. This can result in changes in the skin, eyes, cardiovascular system and gastrointestinal system. PXE International initiates, funds and conducts research, and publishes information for affected individuals, families, and physicians. Educational materials are written both for lay people and medical specialists, in 8 languages and include "The MemberGram", the organization's newsletter. Composed of 4000 members, the organization maintains an international registry of affected individuals, families, and helpful medical specialists. With over 52 offices worldwide, it networks throughout the world, providing written, telephone, e-mail, and meeting connections. The PXE International Blood and Tissue Bank provides tissue samples to approved PXE research projects. In addition, the organization conducts a biennial international conference.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.

 
Copyright ©2014 NORD - National Organization for Rare Disorders, Inc. All rights reserved.