Nevada Advocacy Day Brings Awareness of
Inherited Bleeding Disorders to Nevada Lawmakers
More than 30 children, teenagers and adults who live with inherited bleeding disorders such as hemophilia and von Willebrand Disease will meet with state legislators during Nevada Advocacy Day, on Thursday, February 5, 2015.
The face to face meetings coordinated by the Nevada Chapter of the National Hemophilia Foundation (NHF Nevada) help educate legislators and their staff on the unique concerns of those who rely on expensive medication to prevent life threatening bleeds. NHF Nevada representatives will also educate lawmakers on the long-term health affects from inherited bleeding disorders. Those with an inherited bleeding disorder lack a protein that allows their blood to clot normally. Those with severe forms of the disorder can require an infusion of medicine on a daily basis, leading to devastating financial consequences.
“There are many legislators who are unaware of the cost and long-term implications for those affected by inherited bleeding disorders,” said Kelli Walters, Executive Director of the Nevada Chapter of the National Hemophilia Foundation. “There are several newly elected lawmakers and we hope to meet with each one of them on Nevada Advocacy Day.”
Approximately 2800 Nevadans are affected by hemophilia or von Willebrand Disease. Von Willebrand disease is considered the most common inherited bleeding disorder and as many as one in 50 people have the disease and don’t know it or won’t know it until they suffer a traumatic event resulting in blood loss.
This is the second annual Nevada Advocacy Day and will bring those with inherited bleeding disorders to the state capitol who represent the following cities: Las Vegas, Henderson, North Las Vegas, Carson City, Fernley and Dayton.
NHF Nevada was founded in 1990 and helps meet the vast education and support needs of the bleeding disorders community in Nevada. There are approximately 20,000 people living with hemophilia in the United States. It is an expensive disease where life-long management of hemophilia places a large financial burden on individuals and families. Additionally, NHF Nevada provides services to those affected by von Willebrand disease, which also prevents blood from clotting, and clotting disorders such as Thrombophilia, which causes the blood to clot excessively. www.hfnv.org
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