"The testing has really been helpful to me," said Marcia, who will share her experiences as part of the conference's consumer panel. "It's good preventative medicine, and I know how to take better care of myself now. Without the screening, I wouldn't be taking these proactive steps."
Another conference participant, Lenny Van Pelt, will discuss his experiences as both a patient coping with Gaucher disease and the founder of International Patient Advocacy Association (IPAA), a not-for-profit organization that provides legal resources and support to individuals with chronic illness and rare genetic disorders. Lenny was diagnosed with Gaucher disease in 1986, and has learned first-hand the struggles patients with such conditions face each day. Approximately one in 12 people of Ashkenazi ancestry carry the gene responsible for the disease, though Lenny is actually of pure Dutch descent.
"When I was diagnosed at 27, I had always thought of myself as a healthy individual and had never considered genetic issues related to my health," said Lenny, who is also an attorney. "One of my primary goals as a patient advocate is to increase education and awareness about genetic and chronic disease among health professionals as well as society as a whole."
Another important focus is bringing those most knowledgeable and concerned about
these health conditions--researchers, physicians, patients, industry, nurses,
counselors and other professionals-together under one umbrella t
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Contact: Sandra Van
sandy@vancommunications.com
1-800-396-1002
Cedars-Sinai Medical Center
17-Oct-1999