In a recent press release, the American Kidney Fund (AKF) announced an education and awareness campaign to increase visibility of Fabry disease. The campaign will include encouraging patients with chronic kidney disease (CKD) with an unknown underlying cause to get tested for Fabry disease. The campaign is being funded through a partnership with Sanofi Genzyme, a company working to support the rare disease community for more than 35 years.
Fabry disease is a genetic disorder that is diagnosed in approximately one in 40,000 people. It is caused by a mutation of the GLA gene, resulting in decreased production of an enzyme needed to break down globotriaosylceramide (GL-3) and a buildup of GL-3 in cells throughout the body. Fabry disease can lead to CKD and end-stage renal disease and is associated with damage to the heart and brain. The disease is often unrecognized or misdiagnosed. Early diagnosis can result in interventions that may delay serious complications.
LaVarne A. Burton, president and CEO of AKF, said, “For patients with a rare condition like Fabry disease, the road to a diagnosis and proper treatment can be long and painful. This partnership with Sanofi Genzyme allows us to expand our educational materials on Fabry disease, increase awareness of the condition, and empower patients with practical guides they can use when discussing their health with their doctors or families.”
The resources are for both men and women; however, AFK will conduct special outreach to women, who were once thought to be only carriers of the disease. It is now known that both men and women are at risk for Fabry disease and can experience its symptoms. Symptoms may vary by sex, causing misdiagnosis or underdiagnosis of Fabry disease in women.
The campaign will use digital media, including social media, to reach and engage patients. Visit www.KidneyFund.org/fabry for more information.