Several children, teenagers and adults who live with inherited bleeding disorders in Nevada are headed up to Carson City, NV to meet with state legislators to educate them about their bleeding disorders.
The Nevada Chapter of the National Hemophilia Foundation (NHF Nevada) is coordinating the second annual Nevada Advocacy Day, which takes place Thursday, February, 5, 2015, where those living with inherited bleeding disorders, such as hemophilia and von Willebrand Disease, are getting the chance to 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.
“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.”
There are approximately 2800 Nevadans that 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.
NHF Nevada was founded in 1990 to help meet the vast education and support needs of the bleeding disorders community in Nevada. For more information, please visit www.hfnv.org.