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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.


PXE International, Inc.


Address

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

Phone

2023629599

Fax

2029668553

Email Address

info@pxe.org

Description

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.

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