Tampa, Fla., March 8, 2007 – Today the American Association of Kidney Patients (AAKP) is pleased to announce a partnership with Emory Genetics Laboratory to test individuals for Fabry disease. The partnership, called the Fabry Family Member Testing Project, is a program intended to test individuals with a known family history of Fabry disease.

Fabry disease is a rare hereditary disorder caused by a faulty gene in the body. Approximately, 1 in 40,000 men and 1 in 20,000 women in the United States are affected by Fabry disease. Because the early symptoms of Fabry disease are very nonspecific, individuals affected by Fabry disease are often misdiagnosed with a variety of conditions ranging from heat stroke to multiple sclerosis. The longer the disease goes undiagnosed, the more damage it will do to the kidneys, heart and other organs.

The project goals are to:

• Reduce the testing barriers to individuals who are at an increased risk to be affected by Fabry disease based on family history.
• In a timely manner, identify individuals affected by Fabry disease in families predisposed to developing the genetic disease.  
• Increase quality of medical care for individuals diagnosed with Fabry disease through provision of information, resources, and a detailed path to follow-up and treatment upon diagnosis.

“AAKP thought it was important to sponsor this testing because so many people suffer from Fabry disease in silence and could end up with kidney disease,” says Kris Robinson, AAKP Executive Director/CEO. “It is such a rare disease, very few people know about it and few doctors think to test for it when patients show symptoms. We hope this study will raise awareness and let people know help is available.”

Individuals wanting to participate in this testing program must be at risk to be affected by Fabry disease based on the Fabry disease pattern of inheritance in their family and know the genetic change or mutation causing Fabry disease in their family.

For more information about the Fabry Family Member Testing Project, call the Emory Lysosomal Storage Disease Center at (404) 778-8565 or (800) 200-1524. You can also visit the Fabry Family Member Testing Project Web site at http://www.genetics.emory.edu/LSDC/fabryproj.php.

 The Fabry Family Member Testing Project is made possible through a generous grant from Genzyme.

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