New York, NY (November 12, 2003) - The National Kidney Foundation announced today a joint educational initiative with Genzyme Corp. focusing on Fabry disease, an inherited metabolic disorder that can cause kidney failure. The project will be launched at this weekend's meeting of the American Society of Nephrology in San Diego, the largest annual gathering of kidney specialists in the United States.
The new partnership includes the development of print and online educational materials developed by the National Kidney Foundation for both patients and professionals and a campaign to raise awareness of Fabry disease among physicians, those with chronic kidney disease and dialysis and transplant patients.
Fabry disease is a genetic disorder caused by an enzyme deficiency. The disease causes certain fats to accumulate in the blood vessels over many years, leading to the involvement of various tissues and organs in the body, including the kidneys and heart, which can lead to organ failure and stroke. Classical symptoms include skin lesions, corneal changes, tingling in the hands and feet and an inability to sweat. People with Fabry disease often must cope with significant pain and disability and typically have a shortened life span. The disease affects approximately 5,000 people worldwide. Earlier this year, the Food and Drug Administration approved the first ever treatment for Fabry disease in the United States.
"Because Fabry disease is rare, it is not widely recognized or well understood by kidney specialists," said David Warnock, M.D., president-elect of the National Kidney Foundation. "The recent availability of treatment has made it even more important that nephrologists are able to recognize the signs and symptoms of Fabry disease so that patients may benefit from treatment. Given the progressive nature of Fabry disease, early diagnosis and intervention are important."
Fabry disease belongs to a family of approximately 40 rare inherited diseases known as lysosomal storage disorders. Genzyme is a leader in the development of treatments for these diseases and also specializes in the treatment of kidney disease.
"We value this partnership with the NKF, which will expand our own ongoing efforts to raise awareness of Fabry disease within the nephrology community," said Georges Gemayel, executive vice president for Genzyme's therapeutics and renal businesses. "Our goal is to provide clinicians with the tools and knowledge to identify patients who may benefit from treatment."
Genzyme Corp. is a global biotechnology company dedicated to making a major positive impact on the lives of people with serious diseases. The company's broad product portfolio is focused on rare genetic disorders, renal disease, osteoarthritis and immune-mediated diseases, and includes an industry-leading array of diagnostic products and services. Genzyme's commitment to innovation continues today with research into novel approaches to cancer, heart disease, and other areas of unmet medical need. Genzyme™ is a registered trademark of Genzyme Corporation. All rights reserved.