Last year we lost a wonderful champion of the bleeding disorders community and a crusader for women, like herself, with von Willebrand disease—Renée Paper, RN, CCRN, died on November 8, 2007. But her memory lives on. Nevada Governor Jim Gibbons signed a proclamation declaring Saturday, November 1st, 2008, as Renée Paper Day. The Hemophilia Foundation of Nevada, which Paper founded in 1990, will honor her memory with a picnic in a local park.
Paper’s contributions to the community are numerous. From 1993-1994 she co-chaired NHF’s subcommittee that wrote the NHF Bill of Patient Rights and Responsibilities. In 1994 she founded the Citizens for the Right to Know, a network of nearly 80 organizations representing patients with a variety of health conditions, ensuring that they had accurate information on insurance coverage and benefits. For her efforts to improve patients’ lives, Paper was awarded NHF’s Dick James Lifetime Achievement Award in 1998. In 2007, NHF created the Special Award for Activism on Behalf of Women with Bleeding Disorders to honor Paper.
Paper served on state and federal advisory boards for the Maternal and Child Health Bureau. In 2002, with Laureen Kelley, she co-wrote A Guide to Living with von Willebrand Disease.
CSL Behring was instrumental in spearheading this special recognition.