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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.


Fabry Support & Information Group


Address

108 NE 2nd Street
Suite C
Concordia, MO 64020-0510 USA

Phone

6604631355

Fax

6604631356

Email Address

info@fabry.org

Description

The Fabry Support & Information Group is a non-profit, 501(c)3 organization. Established in 1996, it distributes information about Fabry disease to increase understanding, offers emotional support and networking services, and publishes a biannual newsletter. Fabry disease is an inherited disorder that is one of a group known as lysosomal storage disorders. It has widely varied symptoms that include burning pains in the hands and feet, hearing loss and tinnitus, angiokeratoma, impaired sweating, premature strokes, whorl-like corneal opacities, gastrointestinal distress, renal insufficiency, and cardiac involvement. Clinical onset usually occurs in childhood or adolescence, but symptoms are frequently misinterpreted or ignored. Unfortunately, accurate diagnosis is frequently established in adulthood, when the disease has progressed to key organ dysfunction or failure. Earlier diagnosis of Fabry disease may result in more effective symptom management and improved quality of life. Enhancing awareness of Fabry disease among the public and health professionals is an important function of the Fabry Support & Information Group.

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